This reminds me of something I saw recently, which said "Instead of telling disabled kids that they can do anything if they put their mind to it, we should tell them that the things they are capable of doing matter."
As a disabled person, I also hate when people are like ‘don’t make it your entire identity’. Well you made being a brat your entire identity, so let me live my life without having ignore parts of myself for your comfort.
WritingSchiozo101 right. it’s like hm weirdly if you’re not in my body experiencing my chronic pain you don’t know that it affects 100% of my day so it’s not really your place to say how much of it i should identify with?
It's also quite disarming when you're somebody who isn't coping with being ill very well? I have people constantly annoyed at me for not "having a handle on it" and to just "chin up". Praising for everyone to be brave warrior also causes chronic illness specific ptsd (also known as the "Enduring Somatic Threat" subtype of ptsd) to go ignored. We're not allowed to fall apart because being sick is already "too much a burden". It's so dumb.
Hehe 'disarming' as a military play on words to open your very valid point ❣️ The warrior narrative attaches the expectation of strength, and quite a sexist one too, which doesn't leave room for falling apart and can make it harder still to even ask for help. But as above, that isn't the case here; * hugs *
This is an excellent point about feeling like we can't be more of a burden. I wasn't aware of this subset of PTSD, so that's very interesting, thank you.
The warrior framing really started to bother me in the past couple of years. My mother passed away last August from Stage 4 breast cancer. The warrior attitude always seems to suggest that she just wasn't a strong enough person to fight the cancer that had spread to her brain and abdomen and was causing her intestines to twist. Whereas I saw a woman who would push through the pain and side effects of the chemo to keep living her life the way she wanted to. I have no idea how she could have 'fought' any harder.
kethry1313 i validate that. “she lost her battle with cancer” is such a disgusting term. it wasn’t a battle. they weren’t fairly matched, we don’t have control over the tools we have to fight a terminal illness, and she didn’t just not fight hard enough.
Apparently, especially in regards to families dealing with childhood cancers, the warrior mentality is particularly difficult once a child has died from cancer because the surviving family Percieved that they haven't fought enough either. I think that's terribly tragic as well. Obviously I would hope parents and families would help thier children as much as possible but I know from my own difficulty with my illness that at a certain point there's nothing my family can do. Nothing. At all. It's terrible. But that's how it is 😪.
What’s so crazy is that cancer essentially changes your DNA when it metastases so it’s always bothered me that you have to “battle” cancer. It’s truly sad
"even if you put NO effort into today, you are still valid and awesome in my eyes". I,,, really needed that. I haven't been able to put energy into much the past,,, month?? I don't even remember time anymore 😅
One thing I really hate about using the language of war when describing illness is that it primes us for the idea of “acceptable losses.” I’m an American healthcare worker and I’m getting very sensitive to the battle terminology being used by our leadership because they are leaning *into* the fact that vulnerable folks and underrepresented folks and under protected workers will die and couching it in the language of casualties.
oh my god I HATE the "you're such a fighter!! so strong, fighting the WAR against your disease!!1!" No, Sarah, I'm not fighting against my own body. Willpower and strength isn't going to change my genetics. It genuinely makes me feel so bad when people insinuate I should be "fighting", or working harder. I've tried so far to accept my illness and treat myself kindly. I'm trying just as hard as I need to be. 💓💓💓 I love you for making this video 💕💕
Sounds logical and reasonable and rational to me. Why is it hard for others to understand 😔 ... Continue to be who you are and continue doing what you are doing. After all, who knows you better than YOU. 👍🤟💕
feeling a little called out XD twasn't me though. I firmly believe that there are a lot of times that giving into and accepting some symptoms are far less damaging than trying to fight them all the time
I've never thought about it before, but the "warrior" narrative reminds me about why I hate healthcare workers being called "heroes". Both heroes and warriors deserve applauses.. but no real help, since wow, they're so strong! They are supposed to only count on themselves, so in case they fail it's just their fault for not trying hard enough... They are also supposed to be brave and suffer quietly without bothering the others. Yuk.
I cant stand the "god" mentality that some people have towards doctors, including the doctors themselves on occasion.......youre not special because you have a medical degree, nor are you above others.....you are simply differently educated to me. My surgeons are not "heroes", I will always be grateful for the effort they put in on my behalf but they were well paid and, because my problems were very complex, they also gained a lot from the experience. Students got to see a surgery they might not otherwise experience (they wouldnt have operated if it hadnt been and excellent teaching case....one of the registrars admitted that). Worship of any kind tends to irritate me.
@@ala4935 it's more the idea of healthcare workers having to sacrifice time and their wellbeing to work during covid-19, as heroes are often seen as this unstable force that doesn't need breaks and can carry on without stopping. it's admirable, but it shouldn't be expected of them and they shouldn't have to do that.
@@heatherrowles2580 Not to forget: Some doctors are idiots. I've been so angry with my GP recently. First he didn't want to test me for vitamin D deficiency. Then he did it and - whoops - I have vit D deficiency. I also asked about another condition that often goes with lack of some nutrients, but he didn't want to test that too. Sent me away with: "Go eat more vegetables." The problem is that I'm actually failing at managing my everyday life. Sure I would love to manage to make myself healthy food, but I'm not at this point. Am I to continue suffering until I miraculously get my shit together? When I told him that I struggled with that, he said: "Well, then we'll have to consider psychotherapy." and I was so baffled. I have been in therapy and under medication for the last 19 years with only small breaks in between. How could he not know that? I've been a patient of this guy since 9 years now.
Accepting reality is at the core of this issue. The entire "warrior" narrative exists to perpetuate the illusion of agency, where there is none. I believe most of the blame for this can be attributed to our modern society where more successful individuals are praised for their superior abilities and hard working ethics, when in fact majority of their success can be traced down to pure chance, like inheritance, healthy genes, powerful social circles, being at the right place at the right time, etc... Also, as a former computer graphics worker, I appreciate your tracking skills.
depends on your idea of success I suppose? Some successful outcomes can be worked towards, such as becoming highly skilled at an art form or subject etc, what do you mean particularly by success here? But I agree yea, fighting against something you have no control over is wasted effort, if you absolutely cannot change something then the effort put into that is wasted when it could instead be used for better, more productive, healthier things, or just fun, that's valid too.
@@dragonicbladex7574 It's not MY idea of success, but attaining wealth and/or fame is most often assumed. These 2 things in particularly are most dependent on chance. Working hard is implied, but in some cases even that is not required.
as someone who had a life altering injury i really hate the “you’re so strong!!” or “feel better” because i had no other option than to survive and feeling better isn’t an option
People ask me all the time how are you so strong? How do you do this every single day? My answer has always been the same "because I don't have a freaking Choice trust me this wasn't the first idea that popped into my head when waking up in the morning" how I wanted my life to unfold. It's not a choice for some reason that's really hard for people to understand.
Leslie Ann haha exactly. “how do you do it!?” what’s my other option? NOT doing it? just lay down and die? how do you do whatever it is you do? because this is just my life. i’m doing life like everyone else is.
Honestly, I totally feel this as a young adult with cerebral palsy, anxiety, and depression. People often don’t realize how much this mindset doesn’t help anyone. These last couple days I’ve had to tell myself that it’s okay to be sad, confused, and in pain and today. Even my mom (who is currently disabled from cancer) tends to ascribe to this narrative of telling me to “get over” things like my anxiety and depression, and it’s a struggle...
My anxiety has gotten worse again recently and my parents keep telling me to do what i did last time to get over it, but it just doesn't work like that! I understand how you must feel 💞
I have CP too and sometimes I feel so guilty for being sad about my disability because there’s so many people who have it worse than me and I should be grateful. Is this normal?
"A uniquely boring trauma" Wow, Jessica, you have such a poignant way with words. The bodies we inhabit are atypical ones and the language we use around them exhert their own affective forces on our relationships with them. With ourselves. I really appreciate your insight, energy, and vulnerability. Much Love
i really hated being told i was “so brave!” while going through cancer treatments. it’s not brave to try not to die. it’s just normal. now i’m “so strong!” for having chronic pain. and no, not really. i’m just living the only life i have.
They’re not fighting, they’re coping. There’s a difference, they are not at war, they are trying to accept their (chronic) illness and learn to live with it.
when I was diagnosed with an acquired brain injury (12 years after it had been acquired), my parents didn't understand what it meant. at all. with my diagnosis came a lot of relief, and anger at the diagnosis itself and the system that had failed to help me. despite all that, my depression lightened! and my parents took that to mean that at some point, I would be "back to normal". I received treatment at a brain injury hospital in the middle of nowhere - the treatment being a "brain injury school" where people with the same-ish severity of brain injury could meet and there would be lectures about aids and strategies and apps to help with memory and stuff. it was very helpful! the people who were there had acquired their injuries in different ways. some had been mysteriously ill and had ended up in a coma. a few had been in traffic collisions. one person had been headbutted by a horse. I'm getting off track. the point: the brain injury school had a family day as one of the final things it did. and I told my parents blatantly that it was vitally important to me that they went. and they did. and after that, they understood more. but not because they had received new information. they had just been fed the same information I'd been giving them, but this time by a person in a lab coat. they repeated information back to me that I'd told them the day before the family day as if it was something I didn't already know. that really hurt. I had a point with this re: warriors (very foggy today). validation! yes. it's so important, and I never felt as if I've been given enough, if any at all, from my family. to this day (4 years later) they expect me to always be improving, to keep on fighting. right now I'm feeling really, really low. the pandemic is keeping me from getting a non-emergent procedure that would absolutely improve the quality of my life (unrelated to my brain injury). I feel as if I'm regressing to a time in my life before my initial breakdown that started me on the path to getting diagnosed. I'm doing video sessions with my shrink and on medication but I'm really struggling. i'm an introvert but the level of isolation is really starting to get to me. and I'm pmsing like mad, which is not helping one bit. this is very ranty. i had a point, i think i made it. now I'm rambling.
I adore the progression of this message. 😂 I also feel for your experiences. I'm not good with wording things, so I'll leave it at that. And my best wishes!
Validation versus invalidation and not being listened to is a serious problem in so many spheres, but definitely in disability and chronic illness, because we know ourselves and we can also credibly and validly parse what's been told to us, usually even if we have a cognitive impairment! Capacity deserves a nuanced understanding that maximises agency. And there can be a big impact of confidence and self esteem, the way everything is so adversarial. Things feel like a battle just to be heard and feel like we're on a workable footing before I even get to exploring my abilities and thoughts about things, which seems essential for discovering what works and even beginning to meet the goals of other people (for me as Autistic/DME and possibly with some additional head injuries), the confidence takes work, to branch out and feel like I can do that by myself anyway and finding the avenues for the flow and happier spaces, and it's much easier when people are working with you not against. xxxx
PS. I start saying that I am rambling for a few weeks and then I stop. It doesn't feel very helpful. Especially if I can't get a clear idea of what it means or feel the opposite skill happening, that's not a flick of a switch either! And I sometimes do strongly disagree with all the ire rambling gets. If you're sitting in a rocking chair on a porch or some waspy battleaxe or an American statesman apparently it's fine!? What's wrong with rambling is just attention people are willing to give you and whether they feel safe working it out, or something!? Paragraph structure is not the only way to frame thoughts. Kishotenketsu (Japanese four act story structure, problem - expansion - leftfield/random/external aspect - with the resolution at the end) seems like rambling to some according to a business page I read but I love it.
When I'm having a bad mental health day, I really appreciate it when my boyfriend just listens to my needs. When he asks me to do something and I say "No, I can't today." he accepts that answer and make sure I'm doing ok and if I need anything. My family on the other hand don't really understand my limitations like at all. When I say I can't do something at that moment they just don't compute. Like I'm just too scared to try or they think I'm just trying to get out of doing something I don't wanna do. Some days I'm functional and some days I'm not, and this is a lesson I've had to learn to avoid holding myself to unreasonable standards. I've pushed my limits before and I've hit terrible rock bottoms that I never wanna return to. I don't want to be in a constant battle with my own brain and body. I want to nurture myself and give myself room to exist outside of that me vs brain and body mentality. my body is where I live and how I experience the world. I don't wanna be at war with it.
I've had asthma long enough to class it as all my life, and the thing about asthma is you can't fight it, you can't war and battle against it, because that's how you end up not breathing. You have to work with it, know your limitations and not try to force yourself into situations that are dangerous for you. Even knowing that I still ended up trying to fight my CFS, mostly that was because I didn't know what was wrong with me and it took a long freaking time to discover what it was, but there was also this narrative of 'if I accept that I'm not well enough to do these things then I'll be loosing the battle, I have to push, I have to fight!' Which, of course, just exacerbates my illness.
As I grew older, I have taken up just refusing to have exams with pulmologysts that push the "You could be absolutely the same as everyone" narrative with asthma. Absolutely not. I have daily medication for it, and I still can't run to catch a bus when it's cold weather without heaving. Knowing your limits and listening to what you feel is wrong (even if others don't see it / acknowledge it) is of the uttermost importance.
As a somewhat competitive person, I personally use the 'warrior' narrative to help me keep going, and also to acknowledge the uglier side of my illnesses. It's not always what I use, but its a tool in my kit and it's really interesting to see how it can NOT work, too!
The warrior narrative made it very hard to be kind to myself and my body. I felt more angry and alone, because I had to fight. I wasn't relying on others. Learning to be kind to myself and my body changed my life.
This is precisely what i needed - I have EDS and sold my horse this week because I couldn't be the horseowner I wanted to be anymore... it sucked giving up and letting go, but at least I got to live that dream for 9 wonderful years (at least my life at the stable were wonderful, the rest was kind of a mess) 🤩
I'm friends with a girl at my barn who has EDS. Shes only 14 or 15. She just bought her first horse last year. She doesn't want to give it up. I admire her because I also deal with chronic illness and most days she would push herself to keep going whereas I would say nope and call it a day. I've missed riding these last few months but my body just didnt want to keep going. I do push myself most days because things need to get done, but I do have a lot of days where I just say screw it and dont do a damn thing lol.
I'm truly sorry you had to sell your horse. Since I was little, I've always had horses in my life, granted it was off and on, but horses have a way of healing me, whether I'm in the saddle or grooming or working in the barn.
The hardest part is forgiving my body for this 'betrayal' but having a horse has cost me every thing else I wanted to do for the last four years, so at least I get to do all the other stuff now 😊 I'm choosing to focus on the positive, so I don't slip into the deep depression I hear calling my name...
Since finding your channel you’ve made me feel a lot more comfortable with myself. I developed ME almost 5 years ago & while trying to understand my condition I’ve felt pressure online to make it my identity which, to me, was scary & demoralising. Watching your channel I’m finally starting to understand that yes, ME is a part of me but it’s not all I am, so thank you.
I have chronic migraines which hardly qualifies me as chronically ill, but I hate so much when people call me brave. Like..I don't have a choice, it's not bravery it's just my life. It puts so much pressure to be this perfect fighter, never complaining, quietly suffering, you're not a real person anymore, just this inspirational being existing to give people hope
Thank you, being stuck with a chronic autoimmune disease is miserable, and people saying you're so strong is stupid to me. Im not strong, it's a disease I'll live with the rest of my life.
This is such an important point to make, illnesses are much more nuanced than something to "fight against". I don't have any physical ailments, but I had moderate to severe depression for a couple of years and a turning point in my recovery was understanding that I am genetically predisposed to more intense negative emotional responses and that overcoming depressions means learning to manage those responses, not struggle against them. Any condition that affects your physical and/or mental health is at the same time a part of you, but also distinct from you; you can have an illness, but you are never defined by it, and that nuance is very important to understand. So much of dealing with chronic conditions means simply living with them, and the "warrior" portrayal can take away from that experience and instead romanticizes it as something it's really not.
Yes to all of this! I have a rare autoimmune disease, and I’ve talked in therapy about how I hate when people call me, “brave.” And I worked out that I don’t like that term because to me, bravery is when you have a choice to do something heroic. And I didn’t have a choice. This is just my life. It also felt condescending to me when people would praise me for leaving the house, getting out of bed, or going to school. I’m not brave for doing normal things that most everyone does in the world. It felt like, someone is giving me a participation award for just showing up. I also never liked when people say, “You are not your disease.” I absolutely am. It fully has shaped my personality, every choice I make, my everyday life. You can’t separate me from the disease because I would be a completely different person without it. I feel like it’s not ME that should accept that I am separate from my disease. I think it’s everyone else that should recognize that I’m NOT.
To me it's unfair to make people feel bad for "not fighting enough" when they have no control over there circumstances. It's not good for our mental and physical health to be fighting 24/7 and sometimes it's just not possible. I think instead of simply telling people (especially those with mental illnesses) to fight, we should be there to listen to them and support them. We should tell people with chronic illnesses that it's ok to feel like crap and not always be doing your best. My point is, we need to build up endurance through love and support. Saying "fight harder" doesn't help anyone. And telling someone "OMG you are so strong I can never get through what you've been through" is almost not believing in your power. We have to realize that we can only do the best we can and there are a million factors involved in why someone else can't do something you can do and vice versa. Of course knowing yourself as a warrior can be good, it's good to see yourself for your strengths and know that who you are is enough. It's good to reconginze how well one has done, but saying "fight harder" is extremley insensitive. I much prefer "You are perfect just the way you are, there is no pressure to do anything and it's ok to feel like crap. You have done so many good things and have helped so many people. You have tried your best." That makes me feel like a warrior. But saying to fight when it's out of my control can be hurtful
I love you so much for this. Saying people are "warriors" and "beating" illnesses get my goat. The people I lost to - among other things - cancer did not die because they didn't fight enough. It's victim blaming and I hate it
A bit different as my (only diagnosed) condition is a mental health issue, but I really felt what you said at the start about "just trying hard enough". I have anxiety, which is hard to separate from 'just me' at the best of times, and actively messes with my head at the worst, and it wasn't until a doctor recently made of point of saying that I would have this for life that I realised how much stigma I'd absorbed. That I'm not faking it, that I do deserve support when it's offered, and that I can't overcome it through sheer force of will. In fact, when I try to do that and pretend I'd be just fine if I tried a bit harder, it usually makes everything a lot worse. Now, even though not much has changed, just acknowledging that and seeking out more help has actually made me more functional, not less like my mind/stigma suggested. TLDR: this applies to mental health too, you can't just 'get over it' by 'trying harder' and if this is your internal narrative right now please seek help, just acknowledging and accepting it makes a huge difference I promise. x
In Germany we had in the 90s and the 2000s a sect who called themselves NPL for neurolinguistic reprogramming. It's central dogma was that, success can be, reliably!planned. Their method was a kind of bootcamp in which participants were exposed to a combination of skills training, flanked by relentless repetition of variants of success through planning slogans. Jobcenters hired NPL members who then taught unemployed people they can "plan" their reentry into the job market. The job market was of cause still incapable of providing the jobs needed, by these people. That left many of the participants who, still didn't get a job, with an added dilemma: Highly motivated by the cleverly executed indoctrination program of NPL, these people had put all their strength into their reemployment efforts, because they believed that "everything can be planned." Yet even in giving it all they had failed. But now they had learned, that their unemployment was their, and ONLY their failure! It caused a lot of grave harm!
ah yes, I am such a warrior when my lung stops working and I am gasping on the ground like a dying fish. I am such a warrior when my heart is working 3 times harder than everyone else's. Because being a warrior is smiling and being happy and making yourself less of a burden to everyone else around you. The warrior mentality of it all drives me crazy, and I'm not chronically ill, my lung is just broken.
Oh, this video made me ugly cry. I've been suffering with mental health issues for over 10 years. I don't know if this is something I can overcome or just manage. In parallel, I'm also a healthcare worker, and have been increasingly frustrated by the language of "frontline workers going to war" and so on. For one, we're the backline, the frontline is people staying at home. Also, I kind of signed up for this kind of crisis and do well in managing emergencies, but didn't see this pandemic coming, and am worried for my family's, friend's and patient's health. I'll go where you want me to go and do what I need to do to help people, but in no way do I have the tenacity or bravery of a soldier.
This resonates with me sooo much. As a nurse, I feel especially when a person is dying from chronic illness or cancer, I see their relatives just pushing them verbally to "keep fighting". But sometimes these patients are just tired of living with that condition. For some reason, certain people think of them as weak and not trying enough for that, when it's actually just their own will. They can't seem to understand how cruel fatigue, constant pain or nausea can be and that it's ok to not want to go through that anymore.
thank you for giving your perspective! i am thankful that you said “even if you did nothing today, you are valid” that makes me feel better about my rest days with my migraines that could be classified as chronic. thank you!
Thank you so much for this. It's an entirely different situation (every situation is) but when my father had terminal brain cancer he got this all the time and it used to upset him so much--and you can imagine how much we were trying to avoid anything at all upsetting in that last year. It came from (usually) well-meaning friends and family, the "you can fight this, you got this, you're going to beat it" and even pushback against the idea of going on hospice even though it was his choice and the right call for his situation. And he always responded "no, I can't." Not because he wasn't strong, not because he wouldn't have tried if there was anything to be done, not because we weren't pursuing every possible treatment option, but because he literally couldn't stop it or survive it. From the second it was diagnosed, there was no chance of recovery and less than three years to live, confirmed by dozens of doctors and surgeons. Telling him he could beat something that he just objectively couldn't beat really got him down, and made him feel like he'd "lost" when the tumor ultimately started severely impacting his ability. I know there are other cancers and diseases with better prognoses, and people who might find that mindset encouraging, but the assumption that it was the right thing to say was incredibly hurtful at a very vulnerable time. He was strong, in a way unique to him, but not a way digestible by some of the people closest to him, and it was hurtful to him that he didn't have their support in not fighting and not being okay.
As someone who is disabled and chronically ill, thank you so much for this. I love this. The warrior mindset makes me feel like I'm just not fighting hard enough when I have a rough day, and I feel like I've "lost" and I've "failed." It's a form of gaslighting and its awful. Thank you so much for this.
I never thought of it that way...yet I get upset when people tell me I “can’t think that way” when I say I’ll never get better. I’ve felt so guilty every time I’ve been unable to push through or live up to my extended family’s expectations...but I put “EDS Warrior” on everything. Perhaps it gave me some false sense of control. I took a meditation class taught by Vidyamala Birch on coping with chronic pain, and the number one thing she recommends is acceptance and focusing on each moment as it happens rather than the time until your next medication dose, or the rest of the day or night. Being a warrior implies some strategy or planning ahead. Thank you for sharing your point of view. Even if I hadn’t agreed with you, it is always worthwhile to listen. You never know when you might hear something profound or change your mind.
I love the phrase "energy levels of a very active slug"😂. Thank you for giving me a new descriptive term for the 100th time I'm asked how I'm doing now as it will have suddenly changed. Also thank you for the brilliant chronic health content it make me feel like I'm not the only one who doesn't like being an "inspiration" because I have dodgy genetics and take loads of meds just to vaguely function.
As someone dealing with several mental illnesses, I very much agree with this sentiment. Mental illness isn’t something that you can just will yourself through. Some days are better than others, and a bad day shouldn’t be seen as a defeat.
Talking about bags under the eyes... I can fit my shopping in mine! 🤣🤣 Hope everyone is keeping well and safe. Don't ever change Jessica, I love you because you are you. You help put me at ease because you are honest, and accepting of all narratives. The world needs more Jessica's. ❤❤
I think that for me it’s often important to divorce myself from the “fighter” narrative because I struggle with chronic fatigue and I have a tendency to keep pushing myself until I drop. That’s not a healthy choice for me and sometimes the strongest thing I can do is stop fighting and rest.
Oh thank goodness that someone else is tired of being seen as a hero just because we are getting through life like everyone else, just with chronic illness and/or disability. That makes you my hero, Jessica. Hang in there . ❤
I have had a chronic illness since I was 14. The amount of times ive been told to "just fight through it" when I physically couldnt was difficult to hear. It just reinforced this idea that if I wasnt constantly fighring I wasnt doing enough and it left me feeling worthless.
Oh Jessica i think youre so true. I don't have a chronic illness, but people who have one have to live with it. It's not easy as I expect, and I guess saying "come on fight" is a real easy sentence for people who don't have a chronic illness
As someone who deals with mental illness, identifying as a warrior or fighter has really helped me because it is acknowledging all the work that goes into keeping my mental health steady. It also makes me feel like I have control over my recovery and life. If I stopped fighting it, the depression would consume me.
Thank you for addressing this. I lost my parents to cancer and I HATED the 'warrior'-ness about it. I hated it. It wasn't fighting. It was getting the best medicine they could afford and could receive and living their life as best they could. It was suffering and it was joy. It wasn't fighting.
Sometimes, thinking of myself as a "fighter" gives me energy to get up again and recover from a rough time. Sometimes, thinking of my mental illness as a war or struggle just makes me feel worse about myself. I try to figure out what works for me and feels helpful in the moment
Thank you for this! I, too, hate the "warrior" narrative. Being a warrior sounds to me like another job and I've got enough to do with resting and healing, thank you very much.
Thank you for describing the feelings I've been struggling with for awhile. Chronic migraines, vertigo, and mental illness feel like chains on my body, but when I think of it as different aspects of a painting, it doesn't feel so bad.
My mum specifically asked for people not to talk about her 'fighting' cancer or 'losing the battle' etc. Because she wanted to work with her body to help herself feel a bit better, rather than 'fight'. With my autoimmune stuff my body is already fighting itself! I don't need to add to that!
Having had both cancer and chronic illnesses I absolutely HATE the warrior mindset as well. When you feel terribly sick having someone call you a survivor sucks & telling you to keep fighting because in those moments you just want comfort and compassion for the shit your experiencing. With the identity thing, after cancer I had someone say I was making cancer my identity. In reality I was spreading awareness and discussing the life long side effects I will live with as a result of the cancer and chemo.
I love you more every time you speak Jessica! And especially knowing you're a Buffy lover too 😉 This whole video is such truth for me. Accepting my chronic, progressive illness certainly helps me feel more at peace. Constant pushing from both myself and others to try harder is something I now resent, as it leaves me feeling like a failure for my body not meeting the unreasonable expectations placed upon it, which I literally have no control over. In the same way there is a need for a hopefilled outlook vs toxic positivity, I believe there is the need to do what we can to improve our wellness vs the toxic warrior syndrome that only sets us up for guilt, shame, failure, depression and anxiety. I have certainly felt like a failure as a sick person. I used to have good days when I could still manage to get dressed & look like a "normal" person, plus had the energy to be giving to others and "inspirational", whereas for quite some time I've struggled to just care for my own basic needs and have withdrawn into myself. I would see others "battling" through, looking amazing, providing inspiration (like you) and compare myself (first mistake!). Then I realized that our illnesses, bodies, support systems, resources restrictions and cabilities are very different, and comparison only serves to make me feel guilt and failure for something completely outside my control.
That deep down feeling of “maybe I’m not trying hard enough” when fighting a chronic physical/mental illness is soooo important to acknowledge! I think so many of us with chronic illness have that feeling of shame or guilt at some point, of “why can’t I do this and they can?” Or “how come I can’t get better when I’ve tried for so long, I feel like a burden”. It’s so hard to accept that a chronic illness isn’t something we can wish or “try” or do our even absolute best to make go away. Society wants us to believe that there is an after because they don’t understand (and often just can’t because they have no experience of that level of pain or fighting, or remain uneducated, etc) that for some conditions there is no cure, or getting better fully. Just symptomatic relief, acceptance, and management. I’m still working on not feeling that self doubt myself after so long. Thanks for this, great video Jessica! Sending love 🖤💜🖤
It does bother me, even when it comes from a place of good intentions when someone emphasizes how "strong" I am for "fighting" through different illnesses. I was diagnosed with chronic mental health disorders when I was 17 and after going to therapy and somewhat coming to terms with it, I was diagnosed with cancer when I was 19. The subsequent treatment has left me with permanent organ damage. It's really interesting to see the parallels and differences between mental and physical illness and it's near impossible to separate these aspects of myself from who I am... it sometimes feels like so many of my values come from insight and experience I have from my illnesses. I'm a first time viewer and I'm really glad that I found your channel! I feel like I can't put my thoughts into anything other than rambling, but I just really appreciate this community.
I really appreciate this video as I'm tired of hearing "Just keep going it will get better". I have Sickle Cell Anemia and Type 1 Bipolar disorder , So I am constantly in pain due to blood clots and routinely in the hospital for blood transfusions monthly. Honestly with Covid 19 I'm barred from leaving home but for the exception of transfusions, which can be super depressing at times. I'm not going to fight my body but walking along life's path and this is mine. So screw it! But shout out to my wife for making life easier even on the worst days.
Got an email from a teacher. She said how proud she was of me for over coming my challenges. These challenges being my autism and physical disabilities, both of which I’ve had my whole life and will for the rest of it.
I used to be really caught up in this idea of fighting my chronic illness and it was so hard! Then one night, when for the millionth time I couldn’t sleep because I was so ill, I just switched in how I saw my body. I saw my body as a child which was suffering and just wanted compassion. And I cried. I have spent the years since switching my attitude. My body is suffering and needs compassion. Fighting talk makes me want to push myself, compassionate talk makes me want to take care of myself. It is the latter that has helped me. And no I don’t want to be seen as a warrior either. Mostly I’m just a blob lying around in my pyjamas too exhausted to move. And that’s ok. Healthies, go find your inspiration elsewhere.
Bringing this to another topic: I also dislike the "battle"-terminology when it comes to productivity. We have to "fight" our laziness and "keep going". You know what happens when I "clench my teeth to push through"? I get migraines. Instead, I have found another way how to be productive while keeping physically and mentally healthy: by accepting the influence of situational factors. Sometimes I don't like the task, sometimes my body is unwell ... I now try to either change the situational factors or to accept them and wait for a better day. But most importantly: I don't judge myself for being unproductive, because it is NEVER because I am lazy.
Thank you! I don't like it when people call me warrior either. I've notice the ones who tell me that, they don't really know me. Even if it is a relative who "knows" me since I was born, I just feel like when they call me that, they're seeing my disabilities as something I have to fight and overcome. But the ones who do know me, they have never called me warrior, they're just there treating me, like me.
I love your make up. The red colour of your lips, the shape of your brows, your hair in an elegant up-do... so pretty. Makes me want to get up, look half decent, and live up to the way you call us; "lovely".
Yes to being stressed as unhelpful. That's why doing things to relieve it (by doing not much or taking time out) is way better for you than fighting. Imma have a cry and then chill. Sending love ❤️
I do not have a cronic illness, or a disability, but this is soooo applicable to mental illnesses, like depression and anxiety, which tbh is the kind of thing I really needed to hear rn ❤
Here's my thoughts on it: the term "workaholic" describes me very well. I will work through any pain and even get a high from pushing too hard. I worked myself into way worse condition. I also was raised by a marine and my nick name was "daddy's little soldier". So basically, the term warrior is ingrained in me and has encouraged me to fight in an unhealthy way. However, I have learned to see the term differently, in more of a strategic warrior sense. It's not just fighting to be able to do things. It's fighting to get care. It's strategizing how to get done what I want to and knowing when to retreat to bed. It's even the battle of convincing myself not to push too hard.
If anyone is a fighter, it's you! I am disabled and I let myself become atrophied and housebound. I mean, you have become famous! How do you do it? I have let excruciating pain get the best of me and it takes warrior to represent a community so beautifully. I'm so glad you got those three mobility devices and psyched to see where in life it takes you! I find it inspiring that you have turned lemons into a success I could only dream of. (There I go again with my inner saboteur. If I pushed myself more, maybe I could be in your heels! Okay, not literally as I can't walk, but it is a figure of speech.) I'm thinking of starting a channel. I know it's not easy and you've worked long time cultivating the possibility and reality that yes, chronic illness influencers are making the rest of us visible and happy and with a vibrant life. I don't have that, but I like to imagine you not unlike a superhero. I hope all your work is paying off and oh, the places you'll go with three mobility devices! To see the world again, to breathe the fresh air will be magical and no doubt healing in some way. Being invisible and cooped up carries with it such a daily weight but when I watch your videos I remember what life used to be, and it makes me relaxed and happy to see someone such as yourself living your best life. It proves to me that good things happen to good people and I'm thrilled to see how dope you'll look in your exciting travels!
I am not an inspiration, it’s not a good thing that I never complain, it’s not good that ‘I don’t let it get me down’, saying these things only implies that I shouldn’t complain, it just shows that I hide my pain - both mental and physical.
the warrior narrative for disabled and chronically ill people reminds me of the overcoming narrative for neurodivergent people. As a dyslexic, ADHDer, and someone with dyscalculia, people mention a lot how what I'm able to achieve academically is incredible and how inspiring it is how I've overcame my dyslexia. And I'm just here like, no? I didn't? Like I'm still dyslexic, I've just used my accommodations in school, talked to teachers, and learned/created strategies that work for me. I haven't overcame anything, this is just how I am. And I get that the sentiment is nice, it just always rubs me the wrong way. Anyways, thank you Jessica for holding a very important and nuanced conversation, as always!
I hope you don't mind, I would love to share this on Facebook with my friends, I love how you compare chronic with "getting better" and how to accept it and how it's easier to let go that way and accept what we are, and how we are. You are also a lovely person too, don't forget that Jessica! Thank you for the video, you touched my heart and feelings with this video (not that you haven't with other videos!)! Hello Claudia! 💖👍✌ Love you both and thank you from the bottom of my heart! 🥰
My life got so much better when I starting working with my body rather than fighting it. I like to think of my chronic illness as a toddler in their terrible twos inside of me, sometimes it feels like it’s about to half a meltdown so I give it what I think it’s wants so it’ll chill out so I can continue to go about my day. But, much like a toddler, sometimes my body has a bad day, an epic meltdown, if you will, and you could try to take the kicking screaming toddler around with you the whole day, but you’re just going to totally wear yourself out and be in horrific pain all day. Sometimes you have to “give in” and just stay home and ride out the storm
I personally like the term, but not because I'm fighting against my illness, more to appreciate the effort that it takes us to just get through the day, and managing to show up to things.
Man, I remember breaking down into the most massive sobbing fit because one random social worker once told me "You're doing enough". I cried and cried and cried, because even back then, when I had no idea what was "wrong" with me (autism) it always felt like the narrative around me was "you just need to try harder". The bone-deep relief of being allowed to just be where I was for a minute was a completely new and wild experience. I still struggle with the narrative every day, and will probably never stop believing on some level that I'm just a lazy lardass who needs to grow a spine, but god. Putting down the warrior/fighter mantle is just such a relief. Love you, Jessica. Sending you all the good vibes to stay safe and sane in your isolation.
I wasn't built for speed,I was built for comfort. So I tend to go with the flow. I tell my mom if you did your best then thats all you can do. ( she is 85 and slipping away)
You may not be a warrior, but you are awfully fabulous. And you are still alive, which is vastly different than what I could have been if I didn’t find your videos. Thank you. 😊❤️🧡💛💚💙💜
Love the top, it’s so cute and spring like. 🥰💖🥰 A lot of times people ask how they can help and they don’t like the answer “leave me alone I want to wallow in self pity right now.” I added the self pity part because I got so tired of people telling me I need to “fight through the pain” or that it’s “mind over matter.” Well my mind is about to explode which is all that matters, again not what people want to hear. After 35 years of diagnosed migraines, I was around 5 years old when the doctor & my mom figured out the problem, my dad has finally figured out if I’m in my room with no lights he brings me a strong coffee (caffeine helps me & is NOT a trigger) and my pill/med cocktail and then leaves me alone until I emerge. At those times I don’t want to fight because it takes too much effort.
i enjoyed this video very much! the first time i really thought properly about this warrior narrative was when i was studying “do not go gentle into that good night” in literature class, where the speaker implores his father to keep fighting regardless of what hardships he might be going through. at the time i just thought that it was a selfish idea, particularly because his father had been suffering for so long, but now that i think about it it’s also because of the whole idea of battling. anyway i guess life is really in shades and there aren’t any absolutes. thank you for the video btw, i liked hearing what you had to say ^-^
I guess maybe not being disabled long enough that I’ve never given it THAT much thought but it very much makes senses everything you said. It is hard. But at the same time it’s normal for us so it’s weird to be praised for just living. I had a few people tell me how I’m their hero and I’m so strong and I explained how they would be the same if they were in my position, and one said “I’d be surprised if I hadn’t taken my life”. That statement shocked me because somethings are a hard yes, but not that hard. Like, life is still pretty effin good all things considered. The warrior term puts on this idea that you always have to be strong and I definitely can’t be strong all the time. Anyways I’m rambling, I like your points and very much agree with them. What a good thought provoking video 👍
I can completely understand this video! I just turned 44, was diagnosed with bulbar onset ALS when I was 42, and I am pretty much paralyzed! I can't use my arms or hands, can't walk, talk, can hold my head up with a TREMENDOUS amount of effort... I type on a device I control with my eyes! Yay technology! I have pretty much accepted my fate, but I have my days, ya know? And people are always telling me to use the time I have left to go out and do fun things! I don't believe if they knew how getting from my recliner to my wheelchair makes me need a nap, they wouldn't make me feel so guilty for not doing activities! Best intentions, I know, but some days it makes me crazy! Sorry for the extremely long vent. Love your channel!
The best! You inspire me to be more positive because I feel happier watching your videos. I in no way have a Chronicle illness but I relate to this video because I have Adhd as an Adult and the words fighting and battling are always thrown at me(Not just because I'm aiming to join a police department and become a Police Officer) but time after time I've been told to just "study harder"and "focus more" and keep going. When all I've ever wanted was to be understood that yes I'm different and these problems I'm facing are real ! And to not label me into the category of stupidity by some standards. Anyway from one of your lovely people thank you for your videos Keep them coming. ✌
Ironically, I have the word Warrior tattooed on my arm- that was before my body went into a tailspin and exploded. I always took the meaning to be different, being a warrior was to be fighting the outside world, it never occurred to me how I was fighting my own body. Looking back I can see where I did try to fight my failing body, rather than embrace it and give it what it needed to succeed. Thank you for a new perspective that I didn't know I needed.
This kind of relates to the comparisons. Someone with the same illness as is me is doing so much more and has accomplished so much more. Which just plays all kinds of game with my mind.
Jessica, thank you! I have spent my entire life breaking bones and becoming deaf and I can't tell you how much "the warrior" trope has annoyed the hell out of me! I've often nearly lost my mind thinking, "I'm not a #*%! inspiration, I'm just trying to get through life like you are! You have a way of summing up just about everything I think daily! You just do it with better delivery than I ever could! :)
I hate having my Autoimmune Diseases...I'm a mother, thankfully of only 1...but still, there are days like today where it physically hurt to get out of bed. Tears streaming down my face yet I get told "You look great" "You don't even look sick" "There are people who are suffering worse than you" etc etc... I try my best to stay positive for my son, thank you Jessica for your uplifting videos. Thank you soo much. Sending so much love and positivity to you and your wife from Las Vegas 🖤
Radical acceptance is a big part of dialectic behavioral therapy where you learn to just drop the things you can't change. It's really been useful for me with accepting that I'm a fatigued lady and some days, Imma be a slug, and that's okay, that's what my body needs that day
Bless you for this. As a chronically ill person: if illness is a war, I'm that kid that enlisted at 16 and wants to go home, all while crying for his mother. I'm tired! I take 13 different meds, and I'm just ... exhausted. I think the narrative of "fighting" illness is the desire for those who aren't ill to feel like there's something they can do to prevent being ill. Thinking they could one day be like me, disabled and mostly bed bound, is probably terrifying. I'm a Buddhist; my illness is just a state of being right now. There are moments where I feel okay, moments I feel awful, and there are moments that are frustrating. It's okay. My body, while chronically ill, is doing its best. Wishing you all the best. Much love to you and your lovely family!
I have often felt like a failure because I couldn't overcome my three chronic pain issues (there is always someone who was healed after doing this or that, or healed because someone prayed for them. Jessica when you said, "I'm just saying...even if you put no effort into today, you're still valid and awesome in my eyes." I wanted to cry because it was so nice to hear that. I've been scolded for owning my handicaps/limitations, but it takes way less energy to make friends with my body rather than fighting it. Thank you for this video!
Love this, it's so much better for my mental health when I just accept and listen to what my body is trying to say because sometimes it's saying curl up in the fetal position and cry out the pain. Anybody with a chronic illness or disability is "strong" but we're still humans who have ups and downs that not everyone else can understand so just listen.
I've had ME and probably POTS for about 7 years now, and i've been chronically ill with various issues for another 7 before that. A couple of years or so ago I got the best treatment for it i've ever had: ACT. Acceptance and Commitment Therapy. It's done more for my health than any form of tablet or other therapy. So many people, including close family told me to fight, fight, fight against my ME, and doing so made me so much worse mentally and physically, because I felt that by still being ill I was therefore letting everyone down. With ACT I realised that the problem lies with their perception of my diseases. I know who i am, what I have and how to manage it best. I know that there may be a time where I do recover somewhat. But for now there's been a lot of bliss in just managing to accept where I am. Stay safe duckies! 💜 xx
My little heart is melting right now because of this! I call everyone close to me ‘ducky’ & this comment made me so happy :’) I hope you’re staying just as safe!
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This reminds me of something I saw recently, which said "Instead of telling disabled kids that they can do anything if they put their mind to it, we should tell them that the things they are capable of doing matter."
i like that she calls me a lovely person
Same
She makes me feel loved
You are!
Yeah that always brightens my day
DomeLeca we’re all lovely people
As a disabled person, I also hate when people are like ‘don’t make it your entire identity’. Well you made being a brat your entire identity, so let me live my life without having ignore parts of myself for your comfort.
WritingSchiozo101 right. it’s like hm weirdly if you’re not in my body experiencing my chronic pain you don’t know that it affects 100% of my day so it’s not really your place to say how much of it i should identify with?
Fucking PREACH
"Don't make it your identity" sounds a lot like don't complain.
@@liawatson5789 THIS.
YEEEEESSSSSS!!!!
It's also quite disarming when you're somebody who isn't coping with being ill very well? I have people constantly annoyed at me for not "having a handle on it" and to just "chin up". Praising for everyone to be brave warrior also causes chronic illness specific ptsd (also known as the "Enduring Somatic Threat" subtype of ptsd) to go ignored. We're not allowed to fall apart because being sick is already "too much a burden". It's so dumb.
Just know that we are here for you. Jessica’s channel and comments section is always a safe space to talk. We love you. ❤️
Hehe 'disarming' as a military play on words to open your very valid point ❣️
The warrior narrative attaches the expectation of strength, and quite a sexist one too, which doesn't leave room for falling apart and can make it harder still to even ask for help.
But as above, that isn't the case here; * hugs *
@@sarahwithstars Not a pun. They just don't know the usage of the word.
This is an excellent point about feeling like we can't be more of a burden. I wasn't aware of this subset of PTSD, so that's very interesting, thank you.
I've started feeling worse about myself because of that.
The warrior framing really started to bother me in the past couple of years. My mother passed away last August from Stage 4 breast cancer. The warrior attitude always seems to suggest that she just wasn't a strong enough person to fight the cancer that had spread to her brain and abdomen and was causing her intestines to twist. Whereas I saw a woman who would push through the pain and side effects of the chemo to keep living her life the way she wanted to. I have no idea how she could have 'fought' any harder.
kethry1313 i validate that. “she lost her battle with cancer” is such a disgusting term. it wasn’t a battle. they weren’t fairly matched, we don’t have control over the tools we have to fight a terminal illness, and she didn’t just not fight hard enough.
I totally get that. But think about this way- sometimes warriors die because they’re human and humans are not immortal.
Apparently, especially in regards to families dealing with childhood cancers, the warrior mentality is particularly difficult once a child has died from cancer because the surviving family Percieved that they haven't fought enough either. I think that's terribly tragic as well. Obviously I would hope parents and families would help thier children as much as possible but I know from my own difficulty with my illness that at a certain point there's nothing my family can do. Nothing. At all. It's terrible. But that's how it is 😪.
What’s so crazy is that cancer essentially changes your DNA when it metastases so it’s always bothered me that you have to “battle” cancer. It’s truly sad
"even if you put NO effort into today, you are still valid and awesome in my eyes". I,,, really needed that. I haven't been able to put energy into much the past,,, month?? I don't even remember time anymore 😅
anastasia louise sane. except for the effort to reach to my nightstand and take my medications i guess :’)
I've been having a hard time lately too. Remember you are valid, just take it day by day. Somewhere there has to be a slightly less horrible day xxx
Same :)
One thing I really hate about using the language of war when describing illness is that it primes us for the idea of “acceptable losses.” I’m an American healthcare worker and I’m getting very sensitive to the battle terminology being used by our leadership because they are leaning *into* the fact that vulnerable folks and underrepresented folks and under protected workers will die and couching it in the language of casualties.
oh my god I HATE the "you're such a fighter!! so strong, fighting the WAR against your disease!!1!"
No, Sarah, I'm not fighting against my own body. Willpower and strength isn't going to change my genetics. It genuinely makes me feel so bad when people insinuate I should be "fighting", or working harder. I've tried so far to accept my illness and treat myself kindly. I'm trying just as hard as I need to be. 💓💓💓 I love you for making this video 💕💕
You got this! I wish you many days where you can get out of bed! :)
Exactly! If I am going to be at war with my body for the rest of my life, it's going to be a very long life...
Sounds logical and reasonable and rational to me. Why is it hard for others to understand 😔 ... Continue to be who you are and continue doing what you are doing. After all, who knows you better than YOU. 👍🤟💕
feeling a little called out XD
twasn't me though. I firmly believe that there are a lot of times that giving into and accepting some symptoms are far less damaging than trying to fight them all the time
oh no as a sarah I am so sorry but as a fellow chronically ill person yes, this. I hate the insinuation that if I worked "harder" I'd be better.
I've never thought about it before, but the "warrior" narrative reminds me about why I hate healthcare workers being called "heroes". Both heroes and warriors deserve applauses.. but no real help, since wow, they're so strong! They are supposed to only count on themselves, so in case they fail it's just their fault for not trying hard enough... They are also supposed to be brave and suffer quietly without bothering the others. Yuk.
Maria Delise i think the difference here is choosing a profession vs being born with or acquiring a disability or illness you had no say in.
I cant stand the "god" mentality that some people have towards doctors, including the doctors themselves on occasion.......youre not special because you have a medical degree, nor are you above others.....you are simply differently educated to me. My surgeons are not "heroes", I will always be grateful for the effort they put in on my behalf but they were well paid and, because my problems were very complex, they also gained a lot from the experience. Students got to see a surgery they might not otherwise experience (they wouldnt have operated if it hadnt been and excellent teaching case....one of the registrars admitted that). Worship of any kind tends to irritate me.
@@ala4935 it's more the idea of healthcare workers having to sacrifice time and their wellbeing to work during covid-19, as heroes are often seen as this unstable force that doesn't need breaks and can carry on without stopping. it's admirable, but it shouldn't be expected of them and they shouldn't have to do that.
that is such a great point!! didn't think about it this way, but you're absolutely right! thank you ❤️
@@heatherrowles2580 Not to forget: Some doctors are idiots.
I've been so angry with my GP recently.
First he didn't want to test me for vitamin D deficiency. Then he did it and - whoops - I have vit D deficiency.
I also asked about another condition that often goes with lack of some nutrients, but he didn't want to test that too. Sent me away with: "Go eat more vegetables."
The problem is that I'm actually failing at managing my everyday life. Sure I would love to manage to make myself healthy food, but I'm not at this point. Am I to continue suffering until I miraculously get my shit together?
When I told him that I struggled with that, he said: "Well, then we'll have to consider psychotherapy." and I was so baffled. I have been in therapy and under medication for the last 19 years with only small breaks in between.
How could he not know that? I've been a patient of this guy since 9 years now.
Accepting reality is at the core of this issue. The entire "warrior" narrative exists to perpetuate the illusion of agency, where there is none. I believe most of the blame for this can be attributed to our modern society where more successful individuals are praised for their superior abilities and hard working ethics, when in fact majority of their success can be traced down to pure chance, like inheritance, healthy genes, powerful social circles, being at the right place at the right time, etc...
Also, as a former computer graphics worker, I appreciate your tracking skills.
Miroslav Hundak “to perpetuate the illusion of agency, where there is none” THAT LINE HIT HARD 👏🏻
Beautifully said!
the only part i disagree with is that this is an attribute of modern society. It's always been this way. It's human nature.
depends on your idea of success I suppose? Some successful outcomes can be worked towards, such as becoming highly skilled at an art form or subject etc, what do you mean particularly by success here? But I agree yea, fighting against something you have no control over is wasted effort, if you absolutely cannot change something then the effort put into that is wasted when it could instead be used for better, more productive, healthier things, or just fun, that's valid too.
@@dragonicbladex7574 It's not MY idea of success, but attaining wealth and/or fame is most often assumed. These 2 things in particularly are most dependent on chance. Working hard is implied, but in some cases even that is not required.
as someone who had a life altering injury i really hate the “you’re so strong!!” or “feel better” because i had no other option than to survive and feeling better isn’t an option
People ask me all the time how are you so strong? How do you do this every single day? My answer has always been the same "because I don't have a freaking Choice trust me this wasn't the first idea that popped into my head when waking up in the morning" how I wanted my life to unfold. It's not a choice for some reason that's really hard for people to understand.
Leslie Ann haha exactly. “how do you do it!?” what’s my other option? NOT doing it? just lay down and die? how do you do whatever it is you do? because this is just my life. i’m doing life like everyone else is.
I hear you. My middle name is Josephine, after my Grandma💜
Honestly, I totally feel this as a young adult with cerebral palsy, anxiety, and depression. People often don’t realize how much this mindset doesn’t help anyone.
These last couple days I’ve had to tell myself that it’s okay to be sad, confused, and in pain and today. Even my mom (who is currently disabled from cancer) tends to ascribe to this narrative of telling me to “get over” things like my anxiety and depression, and it’s a struggle...
Hugs you're not alone
Understanding and compassion are too often lacking in society. We, and I include myself, need to mindful of our words. Thoughts are with you 🤟
you are ok and this whole thing is doing a lot of things to a lot of peoples minds so how ever you feel is acceptable
My anxiety has gotten worse again recently and my parents keep telling me to do what i did last time to get over it, but it just doesn't work like that! I understand how you must feel 💞
I have CP too and sometimes I feel so guilty for being sad about my disability because there’s so many people who have it worse than me and I should be grateful. Is this normal?
"A uniquely boring trauma"
Wow, Jessica, you have such a poignant way with words. The bodies we inhabit are atypical ones and the language we use around them exhert their own affective forces on our relationships with them. With ourselves. I really appreciate your insight, energy, and vulnerability.
Much Love
‘Uniquely boring trauma’-I feel those words in my soul.
Agreed! 💜💜💜
Ro Boccaccio - Yes, that phrase really says it all! A uniquely boring trauma. Sums my life up since I got COPD.
i really hated being told i was “so brave!” while going through cancer treatments. it’s not brave to try not to die. it’s just normal.
now i’m “so strong!” for having chronic pain. and no, not really. i’m just living the only life i have.
They’re not fighting, they’re coping.
There’s a difference, they are not at war, they are trying to accept their (chronic) illness and learn to live with it.
when I was diagnosed with an acquired brain injury (12 years after it had been acquired), my parents didn't understand what it meant. at all.
with my diagnosis came a lot of relief, and anger at the diagnosis itself and the system that had failed to help me. despite all that, my depression lightened! and my parents took that to mean that at some point, I would be "back to normal". I received treatment at a brain injury hospital in the middle of nowhere - the treatment being a "brain injury school" where people with the same-ish severity of brain injury could meet and there would be lectures about aids and strategies and apps to help with memory and stuff. it was very helpful! the people who were there had acquired their injuries in different ways. some had been mysteriously ill and had ended up in a coma. a few had been in traffic collisions. one person had been headbutted by a horse. I'm getting off track. the point: the brain injury school had a family day as one of the final things it did. and I told my parents blatantly that it was vitally important to me that they went. and they did. and after that, they understood more. but not because they had received new information. they had just been fed the same information I'd been giving them, but this time by a person in a lab coat. they repeated information back to me that I'd told them the day before the family day as if it was something I didn't already know. that really hurt. I had a point with this re: warriors (very foggy today). validation! yes. it's so important, and I never felt as if I've been given enough, if any at all, from my family. to this day (4 years later) they expect me to always be improving, to keep on fighting.
right now I'm feeling really, really low. the pandemic is keeping me from getting a non-emergent procedure that would absolutely improve the quality of my life (unrelated to my brain injury). I feel as if I'm regressing to a time in my life before my initial breakdown that started me on the path to getting diagnosed. I'm doing video sessions with my shrink and on medication but I'm really struggling. i'm an introvert but the level of isolation is really starting to get to me. and I'm pmsing like mad, which is not helping one bit. this is very ranty. i had a point, i think i made it. now I'm rambling.
I adore the progression of this message. 😂
I also feel for your experiences. I'm not good with wording things, so I'll leave it at that. And my best wishes!
Thank you for telling your story ♥️ I'm not disabled nor chronically ill, but I come here to understand. Thank you for helping me to understand x
Validation versus invalidation and not being listened to is a serious problem in so many spheres, but definitely in disability and chronic illness, because we know ourselves and we can also credibly and validly parse what's been told to us, usually even if we have a cognitive impairment! Capacity deserves a nuanced understanding that maximises agency. And there can be a big impact of confidence and self esteem, the way everything is so adversarial. Things feel like a battle just to be heard and feel like we're on a workable footing before I even get to exploring my abilities and thoughts about things, which seems essential for discovering what works and even beginning to meet the goals of other people (for me as Autistic/DME and possibly with some additional head injuries), the confidence takes work, to branch out and feel like I can do that by myself anyway and finding the avenues for the flow and happier spaces, and it's much easier when people are working with you not against. xxxx
PS. I start saying that I am rambling for a few weeks and then I stop. It doesn't feel very helpful. Especially if I can't get a clear idea of what it means or feel the opposite skill happening, that's not a flick of a switch either! And I sometimes do strongly disagree with all the ire rambling gets. If you're sitting in a rocking chair on a porch or some waspy battleaxe or an American statesman apparently it's fine!? What's wrong with rambling is just attention people are willing to give you and whether they feel safe working it out, or something!? Paragraph structure is not the only way to frame thoughts. Kishotenketsu (Japanese four act story structure, problem - expansion - leftfield/random/external aspect - with the resolution at the end) seems like rambling to some according to a business page I read but I love it.
“I have the energy levels of a very active slug” I have never related to something so much! 😂 I mean, the whole video is relatable tbh! xx
When I'm having a bad mental health day, I really appreciate it when my boyfriend just listens to my needs. When he asks me to do something and I say "No, I can't today." he accepts that answer and make sure I'm doing ok and if I need anything. My family on the other hand don't really understand my limitations like at all. When I say I can't do something at that moment they just don't compute. Like I'm just too scared to try or they think I'm just trying to get out of doing something I don't wanna do. Some days I'm functional and some days I'm not, and this is a lesson I've had to learn to avoid holding myself to unreasonable standards. I've pushed my limits before and I've hit terrible rock bottoms that I never wanna return to. I don't want to be in a constant battle with my own brain and body. I want to nurture myself and give myself room to exist outside of that me vs brain and body mentality. my body is where I live and how I experience the world. I don't wanna be at war with it.
I've had asthma long enough to class it as all my life, and the thing about asthma is you can't fight it, you can't war and battle against it, because that's how you end up not breathing. You have to work with it, know your limitations and not try to force yourself into situations that are dangerous for you. Even knowing that I still ended up trying to fight my CFS, mostly that was because I didn't know what was wrong with me and it took a long freaking time to discover what it was, but there was also this narrative of 'if I accept that I'm not well enough to do these things then I'll be loosing the battle, I have to push, I have to fight!' Which, of course, just exacerbates my illness.
As I grew older, I have taken up just refusing to have exams with pulmologysts that push the "You could be absolutely the same as everyone" narrative with asthma. Absolutely not. I have daily medication for it, and I still can't run to catch a bus when it's cold weather without heaving. Knowing your limits and listening to what you feel is wrong (even if others don't see it / acknowledge it) is of the uttermost importance.
As a somewhat competitive person, I personally use the 'warrior' narrative to help me keep going, and also to acknowledge the uglier side of my illnesses. It's not always what I use, but its a tool in my kit and it's really interesting to see how it can NOT work, too!
That's a great way to think of it.
The warrior narrative made it very hard to be kind to myself and my body. I felt more angry and alone, because I had to fight. I wasn't relying on others. Learning to be kind to myself and my body changed my life.
This is precisely what i needed - I have EDS and sold my horse this week because I couldn't be the horseowner I wanted to be anymore... it sucked giving up and letting go, but at least I got to live that dream for 9 wonderful years (at least my life at the stable were wonderful, the rest was kind of a mess) 🤩
I'm friends with a girl at my barn who has EDS. Shes only 14 or 15. She just bought her first horse last year. She doesn't want to give it up. I admire her because I also deal with chronic illness and most days she would push herself to keep going whereas I would say nope and call it a day. I've missed riding these last few months but my body just didnt want to keep going. I do push myself most days because things need to get done, but I do have a lot of days where I just say screw it and dont do a damn thing lol.
I'm truly sorry you had to sell your horse. Since I was little, I've always had horses in my life, granted it was off and on, but horses have a way of healing me, whether I'm in the saddle or grooming or working in the barn.
The hardest part is forgiving my body for this 'betrayal' but having a horse has cost me every thing else I wanted to do for the last four years, so at least I get to do all the other stuff now 😊 I'm choosing to focus on the positive, so I don't slip into the deep depression I hear calling my name...
People don’t like that I’ve been sick for 22 years. I hate the “Get well Soon” people.
Since finding your channel you’ve made me feel a lot more comfortable with myself. I developed ME almost 5 years ago & while trying to understand my condition I’ve felt pressure online to make it my identity which, to me, was scary & demoralising. Watching your channel I’m finally starting to understand that yes, ME is a part of me but it’s not all I am, so thank you.
"Did no fighting today"
I'm feeling this. I was supposed to be doing online work but then I fell asleep. Didn't even fight it.
I have chronic migraines which hardly qualifies me as chronically ill, but I hate so much when people call me brave. Like..I don't have a choice, it's not bravery it's just my life. It puts so much pressure to be this perfect fighter, never complaining, quietly suffering, you're not a real person anymore, just this inspirational being existing to give people hope
Thank you, being stuck with a chronic autoimmune disease is miserable, and people saying you're so strong is stupid to me. Im not strong, it's a disease I'll live with the rest of my life.
This is such an important point to make, illnesses are much more nuanced than something to "fight against". I don't have any physical ailments, but I had moderate to severe depression for a couple of years and a turning point in my recovery was understanding that I am genetically predisposed to more intense negative emotional responses and that overcoming depressions means learning to manage those responses, not struggle against them. Any condition that affects your physical and/or mental health is at the same time a part of you, but also distinct from you; you can have an illness, but you are never defined by it, and that nuance is very important to understand. So much of dealing with chronic conditions means simply living with them, and the "warrior" portrayal can take away from that experience and instead romanticizes it as something it's really not.
YES! It's ok to feel like crap and that needs to be represented more. No one can fight all the time.
Yes to all of this! I have a rare autoimmune disease, and I’ve talked in therapy about how I hate when people call me, “brave.” And I worked out that I don’t like that term because to me, bravery is when you have a choice to do something heroic. And I didn’t have a choice. This is just my life. It also felt condescending to me when people would praise me for leaving the house, getting out of bed, or going to school. I’m not brave for doing normal things that most everyone does in the world. It felt like, someone is giving me a participation award for just showing up.
I also never liked when people say, “You are not your disease.” I absolutely am. It fully has shaped my personality, every choice I make, my everyday life. You can’t separate me from the disease because I would be a completely different person without it. I feel like it’s not ME that should accept that I am separate from my disease. I think it’s everyone else that should recognize that I’m NOT.
To me it's unfair to make people feel bad for "not fighting enough" when they have no control over there circumstances. It's not good for our mental and physical health to be fighting 24/7 and sometimes it's just not possible. I think instead of simply telling people (especially those with mental illnesses) to fight, we should be there to listen to them and support them. We should tell people with chronic illnesses that it's ok to feel like crap and not always be doing your best. My point is, we need to build up endurance through love and support. Saying "fight harder" doesn't help anyone. And telling someone "OMG you are so strong I can never get through what you've been through" is almost not believing in your power. We have to realize that we can only do the best we can and there are a million factors involved in why someone else can't do something you can do and vice versa. Of course knowing yourself as a warrior can be good, it's good to see yourself for your strengths and know that who you are is enough. It's good to reconginze how well one has done, but saying "fight harder" is extremley insensitive. I much prefer "You are perfect just the way you are, there is no pressure to do anything and it's ok to feel like crap. You have done so many good things and have helped so many people. You have tried your best." That makes me feel like a warrior. But saying to fight when it's out of my control can be hurtful
"because I have the energy levels of a very active slug"
chronic fatigue life be like
I love you so much for this. Saying people are "warriors" and "beating" illnesses get my goat. The people I lost to - among other things - cancer did not die because they didn't fight enough. It's victim blaming and I hate it
A bit different as my (only diagnosed) condition is a mental health issue, but I really felt what you said at the start about "just trying hard enough". I have anxiety, which is hard to separate from 'just me' at the best of times, and actively messes with my head at the worst, and it wasn't until a doctor recently made of point of saying that I would have this for life that I realised how much stigma I'd absorbed. That I'm not faking it, that I do deserve support when it's offered, and that I can't overcome it through sheer force of will. In fact, when I try to do that and pretend I'd be just fine if I tried a bit harder, it usually makes everything a lot worse. Now, even though not much has changed, just acknowledging that and seeking out more help has actually made me more functional, not less like my mind/stigma suggested.
TLDR: this applies to mental health too, you can't just 'get over it' by 'trying harder' and if this is your internal narrative right now please seek help, just acknowledging and accepting it makes a huge difference I promise. x
"Even if you've put no effort into today, you're still valid."
Hit me straight in the feels with this one.
In Germany we had in the 90s and the 2000s a sect who called themselves NPL for neurolinguistic reprogramming. It's central dogma was that, success can be, reliably!planned. Their method was a kind of bootcamp in which participants were exposed to a combination of skills training, flanked by relentless repetition of variants of success through planning slogans. Jobcenters hired NPL members who then taught unemployed people they can "plan" their reentry into the job market. The job market was of cause still incapable of providing the jobs needed, by these people. That left many of the participants who, still didn't get a job, with an added dilemma: Highly motivated by the cleverly executed indoctrination program of NPL, these people had put all their strength into their reemployment efforts, because they believed that "everything can be planned." Yet even in giving it all they had failed. But now they had learned, that their unemployment was their, and ONLY their failure! It caused a lot of grave harm!
Ah that is so so sad :((
Sounds like something we went thought.-.- thanks for sharring this it gives a new Perspektive. (Aftermath ptsd still sucks tho)
ah yes, I am such a warrior when my lung stops working and I am gasping on the ground like a dying fish. I am such a warrior when my heart is working 3 times harder than everyone else's. Because being a warrior is smiling and being happy and making yourself less of a burden to everyone else around you. The warrior mentality of it all drives me crazy, and I'm not chronically ill, my lung is just broken.
Oh, this video made me ugly cry.
I've been suffering with mental health issues for over 10 years. I don't know if this is something I can overcome or just manage.
In parallel, I'm also a healthcare worker, and have been increasingly frustrated by the language of "frontline workers going to war" and so on. For one, we're the backline, the frontline is people staying at home. Also, I kind of signed up for this kind of crisis and do well in managing emergencies, but didn't see this pandemic coming, and am worried for my family's, friend's and patient's health. I'll go where you want me to go and do what I need to do to help people, but in no way do I have the tenacity or bravery of a soldier.
This resonates with me sooo much. As a nurse, I feel especially when a person is dying from chronic illness or cancer, I see their relatives just pushing them verbally to "keep fighting". But sometimes these patients are just tired of living with that condition. For some reason, certain people think of them as weak and not trying enough for that, when it's actually just their own will. They can't seem to understand how cruel fatigue, constant pain or nausea can be and that it's ok to not want to go through that anymore.
Separating out a “human doing” from a “human being”...Amen Jessica 💚
thank you for giving your perspective! i am thankful that you said “even if you did nothing today, you are valid” that makes me feel better about my rest days with my migraines that could be classified as chronic. thank you!
Thank you so much for this. It's an entirely different situation (every situation is) but when my father had terminal brain cancer he got this all the time and it used to upset him so much--and you can imagine how much we were trying to avoid anything at all upsetting in that last year. It came from (usually) well-meaning friends and family, the "you can fight this, you got this, you're going to beat it" and even pushback against the idea of going on hospice even though it was his choice and the right call for his situation. And he always responded "no, I can't." Not because he wasn't strong, not because he wouldn't have tried if there was anything to be done, not because we weren't pursuing every possible treatment option, but because he literally couldn't stop it or survive it. From the second it was diagnosed, there was no chance of recovery and less than three years to live, confirmed by dozens of doctors and surgeons. Telling him he could beat something that he just objectively couldn't beat really got him down, and made him feel like he'd "lost" when the tumor ultimately started severely impacting his ability. I know there are other cancers and diseases with better prognoses, and people who might find that mindset encouraging, but the assumption that it was the right thing to say was incredibly hurtful at a very vulnerable time. He was strong, in a way unique to him, but not a way digestible by some of the people closest to him, and it was hurtful to him that he didn't have their support in not fighting and not being okay.
As someone who is disabled and chronically ill, thank you so much for this. I love this. The warrior mindset makes me feel like I'm just not fighting hard enough when I have a rough day, and I feel like I've "lost" and I've "failed." It's a form of gaslighting and its awful.
Thank you so much for this.
I never thought of it that way...yet I get upset when people tell me I “can’t think that way” when I say I’ll never get better. I’ve felt so guilty every time I’ve been unable to push through or live up to my extended family’s expectations...but I put “EDS Warrior” on everything. Perhaps it gave me some false sense of control. I took a meditation class taught by Vidyamala Birch on coping with chronic pain, and the number one thing she recommends is acceptance and focusing on each moment as it happens rather than the time until your next medication dose, or the rest of the day or night. Being a warrior implies some strategy or planning ahead.
Thank you for sharing your point of view. Even if I hadn’t agreed with you, it is always worthwhile to listen. You never know when you might hear something profound or change your mind.
I love the phrase "energy levels of a very active slug"😂. Thank you for giving me a new descriptive term for the 100th time I'm asked how I'm doing now as it will have suddenly changed.
Also thank you for the brilliant chronic health content it make me feel like I'm not the only one who doesn't like being an "inspiration" because I have dodgy genetics and take loads of meds just to vaguely function.
As someone dealing with several mental illnesses, I very much agree with this sentiment. Mental illness isn’t something that you can just will yourself through. Some days are better than others, and a bad day shouldn’t be seen as a defeat.
Talking about bags under the eyes... I can fit my shopping in mine! 🤣🤣 Hope everyone is keeping well and safe.
Don't ever change Jessica, I love you because you are you. You help put me at ease because you are honest, and accepting of all narratives. The world needs more Jessica's. ❤❤
I think that for me it’s often important to divorce myself from the “fighter” narrative because I struggle with chronic fatigue and I have a tendency to keep pushing myself until I drop. That’s not a healthy choice for me and sometimes the strongest thing I can do is stop fighting and rest.
Oh thank goodness that someone else is tired of being seen as a hero just because we are getting through life like everyone else, just with chronic illness and/or disability. That makes you my hero, Jessica. Hang in there . ❤
I have had a chronic illness since I was 14. The amount of times ive been told to "just fight through it" when I physically couldnt was difficult to hear. It just reinforced this idea that if I wasnt constantly fighring I wasnt doing enough and it left me feeling worthless.
Oh Jessica i think youre so true. I don't have a chronic illness, but people who have one have to live with it. It's not easy as I expect, and I guess saying "come on fight" is a real easy sentence for people who don't have a chronic illness
As someone who deals with mental illness, identifying as a warrior or fighter has really helped me because it is acknowledging all the work that goes into keeping my mental health steady. It also makes me feel like I have control over my recovery and life. If I stopped fighting it, the depression would consume me.
Thank you for addressing this. I lost my parents to cancer and I HATED the 'warrior'-ness about it. I hated it. It wasn't fighting. It was getting the best medicine they could afford and could receive and living their life as best they could. It was suffering and it was joy. It wasn't fighting.
Sometimes, thinking of myself as a "fighter" gives me energy to get up again and recover from a rough time.
Sometimes, thinking of my mental illness as a war or struggle just makes me feel worse about myself.
I try to figure out what works for me and feels helpful in the moment
Thank you for this! I, too, hate the "warrior" narrative. Being a warrior sounds to me like another job and I've got enough to do with resting and healing, thank you very much.
Thank you for describing the feelings I've been struggling with for awhile. Chronic migraines, vertigo, and mental illness feel like chains on my body, but when I think of it as different aspects of a painting, it doesn't feel so bad.
My mum specifically asked for people not to talk about her 'fighting' cancer or 'losing the battle' etc. Because she wanted to work with her body to help herself feel a bit better, rather than 'fight'.
With my autoimmune stuff my body is already fighting itself! I don't need to add to that!
Jessica I need an ASMR version of you 😫😭 you are so lovely ❤️
Having had both cancer and chronic illnesses I absolutely HATE the warrior mindset as well. When you feel terribly sick having someone call you a survivor sucks & telling you to keep fighting because in those moments you just want comfort and compassion for the shit your experiencing. With the identity thing, after cancer I had someone say I was making cancer my identity. In reality I was spreading awareness and discussing the life long side effects I will live with as a result of the cancer and chemo.
I love you more every time you speak Jessica! And especially knowing you're a Buffy lover too 😉
This whole video is such truth for me. Accepting my chronic, progressive illness certainly helps me feel more at peace. Constant pushing from both myself and others to try harder is something I now resent, as it leaves me feeling like a failure for my body not meeting the unreasonable expectations placed upon it, which I literally have no control over.
In the same way there is a need for a hopefilled outlook vs toxic positivity, I believe there is the need to do what we can to improve our wellness vs the toxic warrior syndrome that only sets us up for guilt, shame, failure, depression and anxiety.
I have certainly felt like a failure as a sick person. I used to have good days when I could still manage to get dressed & look like a "normal" person, plus had the energy to be giving to others and "inspirational", whereas for quite some time I've struggled to just care for my own basic needs and have withdrawn into myself. I would see others "battling" through, looking amazing, providing inspiration (like you) and compare myself (first mistake!). Then I realized that our illnesses, bodies, support systems, resources restrictions and cabilities are very different, and comparison only serves to make me feel guilt and failure for something completely outside my control.
That deep down feeling of “maybe I’m not trying hard enough” when fighting a chronic physical/mental illness is soooo important to acknowledge! I think so many of us with chronic illness have that feeling of shame or guilt at some point, of “why can’t I do this and they can?” Or “how come I can’t get better when I’ve tried for so long, I feel like a burden”. It’s so hard to accept that a chronic illness isn’t something we can wish or “try” or do our even absolute best to make go away. Society wants us to believe that there is an after because they don’t understand (and often just can’t because they have no experience of that level of pain or fighting, or remain uneducated, etc) that for some conditions there is no cure, or getting better fully. Just symptomatic relief, acceptance, and management. I’m still working on not feeling that self doubt myself after so long. Thanks for this, great video Jessica! Sending love 🖤💜🖤
It does bother me, even when it comes from a place of good intentions when someone emphasizes how "strong" I am for "fighting" through different illnesses. I was diagnosed with chronic mental health disorders when I was 17 and after going to therapy and somewhat coming to terms with it, I was diagnosed with cancer when I was 19. The subsequent treatment has left me with permanent organ damage. It's really interesting to see the parallels and differences between mental and physical illness and it's near impossible to separate these aspects of myself from who I am... it sometimes feels like so many of my values come from insight and experience I have from my illnesses. I'm a first time viewer and I'm really glad that I found your channel!
I feel like I can't put my thoughts into anything other than rambling, but I just really appreciate this community.
I really appreciate this video as I'm tired of hearing "Just keep going it will get better". I have Sickle Cell Anemia and Type 1 Bipolar disorder , So I am constantly in pain due to blood clots and routinely in the hospital for blood transfusions monthly. Honestly with Covid 19 I'm barred from leaving home but for the exception of transfusions, which can be super depressing at times. I'm not going to fight my body but walking along life's path and this is mine. So screw it! But shout out to my wife for making life easier even on the worst days.
Got an email from a teacher. She said how proud she was of me for over coming my challenges. These challenges being my autism and physical disabilities, both of which I’ve had my whole life and will for the rest of it.
I used to be really caught up in this idea of fighting my chronic illness and it was so hard!
Then one night, when for the millionth time I couldn’t sleep because I was so ill, I just switched in how I saw my body. I saw my body as a child which was suffering and just wanted compassion. And I cried.
I have spent the years since switching my attitude. My body is suffering and needs compassion. Fighting talk makes me want to push myself, compassionate talk makes me want to take care of myself. It is the latter that has helped me.
And no I don’t want to be seen as a warrior either. Mostly I’m just a blob lying around in my pyjamas too exhausted to move. And that’s ok. Healthies, go find your inspiration elsewhere.
Bringing this to another topic: I also dislike the "battle"-terminology when it comes to productivity. We have to "fight" our laziness and "keep going". You know what happens when I "clench my teeth to push through"? I get migraines.
Instead, I have found another way how to be productive while keeping physically and mentally healthy: by accepting the influence of situational factors. Sometimes I don't like the task, sometimes my body is unwell ... I now try to either change the situational factors or to accept them and wait for a better day. But most importantly: I don't judge myself for being unproductive, because it is NEVER because I am lazy.
Nicely said Jessica. The truth is not everyone gets better. The warrior fight doesn’t fit my reality of chronic pain.
Thank you! I don't like it when people call me warrior either. I've notice the ones who tell me that, they don't really know me. Even if it is a relative who "knows" me since I was born, I just feel like when they call me that, they're seeing my disabilities as something I have to fight and overcome. But the ones who do know me, they have never called me warrior, they're just there treating me, like me.
I love your make up. The red colour of your lips, the shape of your brows, your hair in an elegant up-do... so pretty. Makes me want to get up, look half decent, and live up to the way you call us; "lovely".
Yes to being stressed as unhelpful. That's why doing things to relieve it (by doing not much or taking time out) is way better for you than fighting. Imma have a cry and then chill. Sending love ❤️
I do not have a cronic illness, or a disability, but this is soooo applicable to
mental illnesses, like depression and anxiety, which tbh is the kind of thing I really needed to hear rn ❤
Here's my thoughts on it: the term "workaholic" describes me very well. I will work through any pain and even get a high from pushing too hard. I worked myself into way worse condition. I also was raised by a marine and my nick name was "daddy's little soldier". So basically, the term warrior is ingrained in me and has encouraged me to fight in an unhealthy way. However, I have learned to see the term differently, in more of a strategic warrior sense. It's not just fighting to be able to do things. It's fighting to get care. It's strategizing how to get done what I want to and knowing when to retreat to bed. It's even the battle of convincing myself not to push too hard.
I believe “polite and sarcastic” are perfect descriptions of this channel.
If anyone is a fighter, it's you! I am disabled and I let myself become atrophied and housebound. I mean, you have become famous! How do you do it? I have let excruciating pain get the best of me and it takes warrior to represent a community so beautifully. I'm so glad you got those three mobility devices and psyched to see where in life it takes you! I find it inspiring that you have turned lemons into a success I could only dream of. (There I go again with my inner saboteur. If I pushed myself more, maybe I could be in your heels! Okay, not literally as I can't walk, but it is a figure of speech.) I'm thinking of starting a channel. I know it's not easy and you've worked long time cultivating the possibility and reality that yes, chronic illness influencers are making the rest of us visible and happy and with a vibrant life. I don't have that, but I like to imagine you not unlike a superhero. I hope all your work is paying off and oh, the places you'll go with three mobility devices! To see the world again, to breathe the fresh air will be magical and no doubt healing in some way. Being invisible and cooped up carries with it such a daily weight but when I watch your videos I remember what life used to be, and it makes me relaxed and happy to see someone such as yourself living your best life. It proves to me that good things happen to good people and I'm thrilled to see how dope you'll look in your exciting travels!
I am not an inspiration, it’s not a good thing that I never complain, it’s not good that ‘I don’t let it get me down’, saying these things only implies that I shouldn’t complain, it just shows that I hide my pain - both mental and physical.
the warrior narrative for disabled and chronically ill people reminds me of the overcoming narrative for neurodivergent people. As a dyslexic, ADHDer, and someone with dyscalculia, people mention a lot how what I'm able to achieve academically is incredible and how inspiring it is how I've overcame my dyslexia. And I'm just here like, no? I didn't? Like I'm still dyslexic, I've just used my accommodations in school, talked to teachers, and learned/created strategies that work for me. I haven't overcame anything, this is just how I am. And I get that the sentiment is nice, it just always rubs me the wrong way. Anyways, thank you Jessica for holding a very important and nuanced conversation, as always!
I hope you don't mind, I would love to share this on Facebook with my friends, I love how you compare chronic with "getting better" and how to accept it and how it's easier to let go that way and accept what we are, and how we are. You are also a lovely person too, don't forget that Jessica! Thank you for the video, you touched my heart and feelings with this video (not that you haven't with other videos!)! Hello Claudia! 💖👍✌ Love you both and thank you from the bottom of my heart! 🥰
My life got so much better when I starting working with my body rather than fighting it. I like to think of my chronic illness as a toddler in their terrible twos inside of me, sometimes it feels like it’s about to half a meltdown so I give it what I think it’s wants so it’ll chill out so I can continue to go about my day. But, much like a toddler, sometimes my body has a bad day, an epic meltdown, if you will, and you could try to take the kicking screaming toddler around with you the whole day, but you’re just going to totally wear yourself out and be in horrific pain all day. Sometimes you have to “give in” and just stay home and ride out the storm
Of course you are not a warrior! You are a cleric, you bring wisdom and healing to the bruised and vulnerable.
I personally like the term, but not because I'm fighting against my illness, more to appreciate the effort that it takes us to just get through the day, and managing to show up to things.
Man, I remember breaking down into the most massive sobbing fit because one random social worker once told me "You're doing enough". I cried and cried and cried, because even back then, when I had no idea what was "wrong" with me (autism) it always felt like the narrative around me was "you just need to try harder". The bone-deep relief of being allowed to just be where I was for a minute was a completely new and wild experience.
I still struggle with the narrative every day, and will probably never stop believing on some level that I'm just a lazy lardass who needs to grow a spine, but god. Putting down the warrior/fighter mantle is just such a relief.
Love you, Jessica. Sending you all the good vibes to stay safe and sane in your isolation.
When I saw the title I was all like "Agreed, Jessica is not a warrior, she is clearly a Bard and Claudia is a Cleric!"
I wasn't built for speed,I was built for comfort. So I tend to go with the flow. I tell my mom if you did your best then thats all you can do. ( she is 85 and slipping away)
that is my house motto! "you can't do better than your best"
Okay, you aren't a warrior, but you're so important and your words is so true
You may not be a warrior, but you are awfully fabulous. And you are still alive, which is vastly different than what I could have been if I didn’t find your videos. Thank you. 😊❤️🧡💛💚💙💜
Love the top, it’s so cute and spring like. 🥰💖🥰
A lot of times people ask how they can help and they don’t like the answer “leave me alone I want to wallow in self pity right now.” I added the self pity part because I got so tired of people telling me I need to “fight through the pain” or that it’s “mind over matter.” Well my mind is about to explode which is all that matters, again not what people want to hear. After 35 years of diagnosed migraines, I was around 5 years old when the doctor & my mom figured out the problem, my dad has finally figured out if I’m in my room with no lights he brings me a strong coffee (caffeine helps me & is NOT a trigger) and my pill/med cocktail and then leaves me alone until I emerge. At those times I don’t want to fight because it takes too much effort.
i enjoyed this video very much! the first time i really thought properly about this warrior narrative was when i was studying “do not go gentle into that good night” in literature class, where the speaker implores his father to keep fighting regardless of what hardships he might be going through. at the time i just thought that it was a selfish idea, particularly because his father had been suffering for so long, but now that i think about it it’s also because of the whole idea of battling. anyway i guess life is really in shades and there aren’t any absolutes. thank you for the video btw, i liked hearing what you had to say ^-^
You have such a lovely infectious laugh! Always makes me want to laugh with you, especially when you're laughing with Clara.
I guess maybe not being disabled long enough that I’ve never given it THAT much thought but it very much makes senses everything you said. It is hard. But at the same time it’s normal for us so it’s weird to be praised for just living. I had a few people tell me how I’m their hero and I’m so strong and I explained how they would be the same if they were in my position, and one said “I’d be surprised if I hadn’t taken my life”. That statement shocked me because somethings are a hard yes, but not that hard. Like, life is still pretty effin good all things considered. The warrior term puts on this idea that you always have to be strong and I definitely can’t be strong all the time. Anyways I’m rambling, I like your points and very much agree with them. What a good thought provoking video 👍
I can completely understand this video! I just turned 44, was diagnosed with bulbar onset ALS when I was 42, and I am pretty much paralyzed! I can't use my arms or hands, can't walk, talk, can hold my head up with a TREMENDOUS amount of effort... I type on a device I control with my eyes! Yay technology! I have pretty much accepted my fate, but I have my days, ya know? And people are always telling me to use the time I have left to go out and do fun things! I don't believe if they knew how getting from my recliner to my wheelchair makes me need a nap, they wouldn't make me feel so guilty for not doing activities! Best intentions, I know, but some days it makes me crazy! Sorry for the extremely long vent. Love your channel!
The best! You inspire me to be more positive because I feel happier watching your videos. I in no way have a Chronicle illness but I relate to this video because I have Adhd as an Adult and the words fighting and battling are always thrown at me(Not just because I'm aiming to join a police department and become a Police Officer) but time after time I've been told to just "study harder"and "focus more" and keep going. When all I've ever wanted was to be understood that yes I'm different and these problems I'm facing are real ! And to not label me into the category of stupidity by some standards. Anyway from one of your lovely people thank you for your videos Keep them coming. ✌
Ironically, I have the word Warrior tattooed on my arm- that was before my body went into a tailspin and exploded. I always took the meaning to be different, being a warrior was to be fighting the outside world, it never occurred to me how I was fighting my own body. Looking back I can see where I did try to fight my failing body, rather than embrace it and give it what it needed to succeed. Thank you for a new perspective that I didn't know I needed.
This kind of relates to the comparisons. Someone with the same illness as is me is doing so much more and has accomplished so much more. Which just plays all kinds of game with my mind.
Jessica, thank you! I have spent my entire life breaking bones and becoming deaf and I can't tell you how much "the warrior" trope has annoyed the hell out of me! I've often nearly lost my mind thinking, "I'm not a #*%! inspiration, I'm just trying to get through life like you are! You have a way of summing up just about everything I think daily! You just do it with better delivery than I ever could! :)
I hate having my Autoimmune Diseases...I'm a mother, thankfully of only 1...but still, there are days like today where it physically hurt to get out of bed. Tears streaming down my face yet I get told "You look great" "You don't even look sick" "There are people who are suffering worse than you" etc etc... I try my best to stay positive for my son, thank you Jessica for your uplifting videos. Thank you soo much. Sending so much love and positivity to you and your wife from Las Vegas 🖤
Radical acceptance is a big part of dialectic behavioral therapy where you learn to just drop the things you can't change. It's really been useful for me with accepting that I'm a fatigued lady and some days, Imma be a slug, and that's okay, that's what my body needs that day
Bless you for this. As a chronically ill person: if illness is a war, I'm that kid that enlisted at 16 and wants to go home, all while crying for his mother. I'm tired! I take 13 different meds, and I'm just ... exhausted. I think the narrative of "fighting" illness is the desire for those who aren't ill to feel like there's something they can do to prevent being ill. Thinking they could one day be like me, disabled and mostly bed bound, is probably terrifying.
I'm a Buddhist; my illness is just a state of being right now. There are moments where I feel okay, moments I feel awful, and there are moments that are frustrating. It's okay. My body, while chronically ill, is doing its best.
Wishing you all the best. Much love to you and your lovely family!
I have often felt like a failure because I couldn't overcome my three chronic pain issues (there is always someone who was healed after doing this or that, or healed because someone prayed for them. Jessica when you said, "I'm just saying...even if you put no effort into today, you're still valid and awesome in my eyes." I wanted to cry because it was so nice to hear that. I've been scolded for owning my handicaps/limitations, but it takes way less energy to make friends with my body rather than fighting it. Thank you for this video!
Watching your videos are literally everything I need, they're intelligent, informative and funny, and I am LIVING for the fashion
Love this, it's so much better for my mental health when I just accept and listen to what my body is trying to say because sometimes it's saying curl up in the fetal position and cry out the pain. Anybody with a chronic illness or disability is "strong" but we're still humans who have ups and downs that not everyone else can understand so just listen.
I've had ME and probably POTS for about 7 years now, and i've been chronically ill with various issues for another 7 before that. A couple of years or so ago I got the best treatment for it i've ever had: ACT. Acceptance and Commitment Therapy. It's done more for my health than any form of tablet or other therapy. So many people, including close family told me to fight, fight, fight against my ME, and doing so made me so much worse mentally and physically, because I felt that by still being ill I was therefore letting everyone down. With ACT I realised that the problem lies with their perception of my diseases. I know who i am, what I have and how to manage it best. I know that there may be a time where I do recover somewhat. But for now there's been a lot of bliss in just managing to accept where I am. Stay safe duckies! 💜 xx
My little heart is melting right now because of this! I call everyone close to me ‘ducky’ & this comment made me so happy :’) I hope you’re staying just as safe!