You rock so hard Mz. Winter. This channel - your sincerity, your care, your knowledge, and your (unfortunate) understanding - are a soothing, sweet salve, in a decades long coriolis of burns and cuts (and let's be honest - gouges and stabs too). I am meandering through your videos at a pace my spd can actually digest. And I am digesting *deep*. I know you know, but it bears repeating: you're doing incredibly helpful, much MUCH needed work. What you're doing is a not small part of moving the mark forward for spoonies, atyps, and disabled folks, FOREVER. I hope you have a big shiny sign in your house somewhere that reminds you, or flips through thanks from your muses and grateful internet folks out here. :) Looking forward to more of your presentations, and hopefully eventually to actually having a chat and learning more about your programs. In the meantime, wishing you (and any spoonie/atyp reading this) an endless supply of the "fuck it" that is necessary for disabled holidays. And a real strong shield against the inevitable increase of (mostly) well meaning, hurtful comments and actions. And may we all still be here for the new year 💛
"Maybe it's just you" "there's always something" "what is it this week?" "Have you been drinking enough water?" "you just need to eat healthy and exercise more" "get into yoga" "you should try meditating" "it's all in your head" "you're just stressed" "you've been in bed all day that's why" "you've had all day to do blabla" "you'd feel better if you got out of the house more" "you don't help yourself" "it could be worse" "it can't be that bad because you're still here" "the doctors would know if there was something wrong" "who's the doctor you or them?"
I am an outlier that got diagnosed with POTS pretty quickly after symptom onset. The only reason I was able to achieve a diagnosis so quickly was because I am a healthcare worker that works closely with cardiologists and intensivists. Their respect for me as a coworker meant they listened to me and took me seriously. I have other health problems that I’m currently in the process of trying to get diagnosed so I can get treatment. I did not disclose my occupation at the ER recently and was treated horribly by the doctor until my labs came back verifying what I was saying and his treatment and tone changed REAL quick. I see it at work all the time… people in the medical field can become so incredibly jaded and it’s really unfortunate. All we can do is continue to advocate for ourselves until we are blue in the face. Don’t ever stop advocating for yourself!!
I was treated as if I was just a whiny hypochondriac until the test I put my foot down and requested came back very very low, confirming the diagnosis I tried to sway the doctor to. Now I am treated so much better and actually listened to when I say something hurts🙄
I have been in the same situation for over five years now with 24/7 headaches and sensitivity to light, sound, and touch along with additional symptoms. I hope that we will both eventually get the answers we deserve. Thanks for sharing.
I am feeling that "pretending to be better than you are" so much. I am so afraid of telling anyone outside my very closest, most trusted circle that I am struggling, to the point where I find myself lying to my doctors. Which is... so counterproductive. But when the doctor asks "how did you do" I find myself saying things like "oh it wasn't *that* bad" - meaning, hey, I managed to get out of bed most days this month, but the doctor of course can't read my mind, and know that. That's the reason I need a neutral party to accompany me to the doctors office, because the second a doctor suggests "maybe it isn't that bad" I will cave in and lie, just because of this deep seated fear of being considered "whiny" and "a hypochondriac".
I agree with everything you've said in this video, being chronically ill comes with so many hurdles and I wish doctors, strangers, and even FAMILY MEMBERS would just stop being part of the problem, stop being judgemental, and stop being a pain in my damn behind 🙄
I am sorry for your experience, I remember being mentally ill at 13 and not one adult believing I had a problem, I believe this is because of ignorance and gaslighting related to gender, because I was a little girl, what would I know? So my pain went unseen for so many years, it does hurt that this type of experiences happen to us and yet there are people out there saying this is all fake
My first symptoms started at 15. I was diagnosed with fibromyalgia at 50 by my new doctor (DO) who was fresh from residency. I got lucky and the first medication she prescribed worked great (Cymbalta) for a few years. Now 4 years later I’m in a flare and on FMLA and don’t know if it’s even approved yet which means if they don’t approve it, I could lose my job. Fun week ahead for me. Wish me luck.
ME/CFS RUINED my lifetime ambitions to go into the medical the field. The counselor at the dept of vocational rehabilitation insisted I was just suffering from depression and I was faking the very real physical and cognitive symptoms despite my valid diagnosis by a medical doctor who was knowledgeable in diagnosing and treating the disease just because I wanted to go into nursing. That doesn’t make a bit of sense because the disease was robbing me of what I MOST wanted to do since I was a child!!! She fought me tooth and nail on the reality of my many symptoms and some medical signs consistent with the disease as well. I was really put through the grinder by this horrible person!!! Who in the world would EVER want to endure such a nightmare!!! As you know this is only a small bit of the kind of mistreatment we are forced to endure at the hands of ignorant and unscrupulous people who have the responsibility to help us! Dealing with people who are paid to help you with this disease is a nightmare! And then there’s the actual suffering and disability that it causes as well. Yes, you DO pretend that you are much better than you actually are in order to avoid the criticism and down right abuse of those who are being PAID to help you. At best you are dismissed. NO ONE would deliberately do that. It’s a very painful reality that we face daily. ☹️
Had my first symptoms at age 8. Mother (checkbook in hand) told the doctor, "tell her there is nothing wrong with her! She is just being dramatic!" Two years later, passing out at the same time every day, same thing. I've had surgeries and mutliple diagnoses, but my mother's "you're just dramatic and lazy" was so loud in my head I couldn't get past it. Now that my children are being diagnosed with genetic conditions, I'm beginning to realize it hasn't been in my head this whole time. Medical gaslighting is real and very harmful.
I love your videos adhd since 8 poss. Pos audhd. Ulcerative colitis 18 years chronic pain and fatigue for 14+ years. Just started Humira injections for enter…? Arthritis from/linked to UC. Even if you can’t help me get shit done thank you to you and your muses 😭I’m crying so hard 🤦🏼♀️🤣. Thank you I’ve always felt so alone and hypochondriatic? Also pos. EDS and POTS . I genuinely wondered if I was possessed at one point 😂. Every single diet including AIP 😩 also I drive heavy truck and operate heavy equipment because I sit. Getting in & out, up & down, I have to be very careful. The great thing is I learned young ish and it can be very autopilot on my bad days, very stimulating but I’m alone so also calming. Also blasting music and singing at the top of my lungs and driving stuff so powerful and dangerous really seems to help … something . Thank you again
Thank you for this video. As a mother of an adult disabled daughter and grandchild, I cannot thank you enough, Keep going, you are really helping disabled people and their carers to communicate and understand.
The one I get a lot is people wondering why my parents take care of my kids during while my husband is at work since I stay home. I already feel like a failure as a mom because I don't have the energy and have to depend on my parents so much to take care of my kids, but then to have people look at me weird or imply that they think I'm lazy or something because of it just cuts so deep.
I really feel you. I am a 30 year old guy who ‘looks well’ but has had reasonably severe M.E./CFS for just over a year. I really struggle that everyone still sees me as a fit and healthy young and able guy. I hold people up in shops, forget everything and get so muddled and can’t commit to anything. I am no longer able to work yet most of my friends and family don’t understand at all and say really hurtful stuff (without meaning to be mean). Don’t beat yourself up or compare yourself to others. I really don’t know how to deal with what people think but know you are not on your own!
So many important truths here! 👏🏻👏🏻❤ I have really had to harp on the fact that we typically fake BEING WELL, even though the media would love to make normies think we are actually faking being sick…. You call attention to this fact and the fact that we DONT want to be seen as sick. I wish there was an easier way for us to get this obvious (to us) fact.. Oh well… ((BTW let me know if you ever want to collab ❤️ No pressure, but I think it would be fun! )) Thanks for the awesome video. 😊
Hi! So nice to meet you. 🤩 Could you email me a couple of your videos that you think really highlight you and your work? I'm low on spoons and I don't want to forget to check out your channel, and having an email in my inbox would help with that. 💖 cwinter@accountabilitymuse.com
@@CassieWinter nice to meet you as well 😊 Sure thing. I have never done a collab before, but I can send you two or three videos that I think sum my channel up. 👍🏿 EDIT: Annnnnd sent!
I'm now 69 years old, and I have had symptoms of EDS from early childhood. After all these years, I find a PCP who has vast personal experience with EDS and was willing to talk about it and my medical and surgical history. Imagine that. I cried 😭😭 big time! I told him about my family medical history and he has been a much needed help, along with my neurologist. I'm thankful I've had access to wonderful and kind surgeons over the past 40 years. Even some who held my hand in silent prayer! I hope that more doctors educate themselves and pay attention for early signs of Ehlers Danlos Syndromes.
felt this whole video in my soul lmao. took me years to find a doctor who wouldn't just look at me and the chronic pain and fatigue i've dealt with since i was 15 and tell me "you just need to lose weight and exercise more." turns out no amount of increased exercise or diet is going to help if you just keep injuring yourself/getting sick because you actually have POTS and hEDS and your collagen don't collagen so good 🙄🙄🙄
Ive been thinking of getting a rollator for PoTS, but internal ablelism loves to haunt my mind, I’m not exactly the main demographic for it if you get what I mean. I mean I’m 22, if I get one I’d just be stealing it from a old person who deserves to have it much more than I do… You would not believe the comments I’ve gotten for the past decade and a half, even irl ones that basically confirms all my internal ableism thoughts, like the stealing from old people one, I’m too young to be sick, I don’t look sick (visually) and hell for 16 years doctors have basically done every test under the earth for anything relating to my pots and fibromyalgia and they find literally nothing wrong with me, I even had to endure a very painful spinal fluid test only to get the only answers I always get, everything is fine you have nothing wrong with you… so yes I’m self diagnosed and trust me I get enough comments like I’m a faker and shit enough for that alone….
i feel this. for a good 5 years something hit me out of no where when i was 30... im starting to see my bad life habbits beer and junk food finally caught up with me. im prob 30 pounds over weight not alot but i got railed off the tracks im still figuring out what it is. but non the less im exhausted mentally and physically and if someone talks to me i always hide it to look normal and not draw attention to myself.
"We are faking it to be well"... that is soooo right ❤. Well said. I feel you! Some moments on a good day/or only hour I even feel ashamed if I look better than normal.
thank you. today has been so demoralizing. this video is just what I needed. i felt all alone and hated. it is affirming and validating for me to hear your words
My life is very definitely not worth living. My circumstances are so bizarre that I can not describe them to others without getting accusations in return, and this is on top of the Chrionic disease. Nobody can hold a conversation anymore and there are no adults present in the room.
Watched a few of your videos today. I’m glad I found you. I’ve been gaslit my the medical field for decades. In fact, since I was a kid. I’m desperately trying to figure out wtf is wrong with me because I know it’s not possible for all these symptoms to persists this long and be unconnected. I will keep searching and supporting channels like this because it helps people like me, us. Thank You 🙏
Thank you for doing this, big hugs to you. I checked out your other video for the comments. Wow, some people! It took me 10 years to be diagnosed with joint hypermobility syndrome. It took one NHS nurse at the pain management clinic. Many doctors had no idea. My one at the time didn't know about the clinic but thankfully he referred me anyway after I asked to be.
@18:22 Until you meet someone who does fake it, which I have unfortunately. They are out there. I'd rather believe people and be wrong once in a while than hurt a bunch of people who are telling the truth though like you said. It's a really terrible sort of person who would make up things like this for sympathy and attention, and they do so much damage for those of us who are actually experiencing the symptoms and traumas we talk about. I feel like the universe should give them the things they claim sometimes so they can see what the people they are hurting by ruining credibility have to go through. :(
I totally get it. I'm diagnosed with Interstitial Cystitis. It took me 8 years to get a diagnosis and treatment. I actually went to the doctor that diagnosed me dispite my medical insurance being out of network at that time. I've been through literally hell on earth.
All these are so so true! (sadly!) - its so frustrating and makes life so much more challenging when you're already dealing with so much. Thank you for challenging these and raising awareness!🥰
Thank you so much for sharing this! 💛 I appreciate your courage and your heart. I'm almost 45 and it took 26 years to get my diagnosis. I have EDS, Dysautonomia (at one point it was autonomic failure), small fiber neuropathy, mast cell activation, and ataxia from encephalitis. In the past I was diagnosed with epilepsy, endometriosis, extremely early menopause at 36, telangiectasia in my brain, dislocated tailbone, and arthritis. I've been disrespected and dismissed by numerous doctors and specialists and have numerous close family members that didn't believe me. They all believed I had a mental health problem and talked people out of being there for me while I was in the hospital. I was abandoned when I needed them the most and it hurts more than anything I've ever endured. I realized that I need to find emotional support somewhere else. So, I'm going to join some chronic illness communities and share with them instead of my family. Chronic illness can be a very lonely place to be. So, I'm very grateful that you're spreading awareness. I need to get the courage to create videos as well. Thank you for the inspiration! 🌻 Sending you lots of love!!!
Stepfather of a (and full time patient advocate for a ) spoonie here, let me applaud you for your work, for your courage, and your willingness to be vulnerable. I often accompany her as she interacts with society and observe first hand the reactions of overt discrimination (especially medical "professionals"). And it is usually her who restrains me from expressing my outrage at the ignorance, and gaslighting.[Wanting to avoid bad outcomes - I just want to verbally (sometimes physically) react vs her more rational and much delayed responding). It was 5 years before she was properly (partially) diagnosed (she too was misdiagnosed w/ IBS) and even then we were not informed until we demanded the ER hospitalist read her charts before discharging her w/o treatment. He then informed us that 3 months earlier her GI Dr. recorded that he had tested for and "confirmed Gastroparesis (but) of unknown cause. (It was then we began the battle with insurance to authorize treatment--took 6 months and were only successful after changing insurance providers). I admit that sometimes even I succumb to some these misconceptions (it is REALLY hard to wrap one's head around "Chronic", that this is NEVER going to stop, that she is NEVER going to NOT be ill, that the BEST we can hope for is LESS, less frequent flares, less pain, just less, never NO..., just less.) So thank for this reminder, it helps. Feedback on the production: The font on the slides is too small, even when I pause the video to read, the positioning of the pause indicator; the double bar, prevents being able to read what is displayed.
2:01 First of all, your makeup is beautiful Cassie! ❤️❤️ Love that your empathy and compassion for fellow spoonies shines through in all your vids. Thank you for touching on how we push through pain - I’ve gotten so much of this from family especially. It’s almost praised by them each time I push through the pain, even though it hurts me so much to do so. Meanwhile they think I’m ok if I’m pushing through or I don’t say anything about the pain I’m in. Never invalidate your pain or let others invalidate your pain. When I bring up my chronic pain and talk realistically about it, I get labeled as being negative or get told by my family I just need to trust God more. And good Lord, yes! Don’t get me started on the whole “if you’re sick, then you must be sinning and causing God to judge or curse you”. 😡 I’ve been asked if I wasn’t tithing or if I had been doing something wrong like my sickness is my fault. I don’t think it gets touched on enough with the religious trauma on top of the chronic illness. Then after all the different tests and doctors trying to figure out what’s causing all the pain, they said the tests came back clear and I’m perfectly healthy, but excuse me, I’m the one living in my body with excruciating pain on the daily. Sometimes I wish those who are able bodied could spend just one day in the life of a spoonie - they would be put to shame for viewing us wrongly. Thank you Cassie for validating my pain - I felt seen and understood for the first time in my life. Your video brought me to tears, finally someone who understands 🥺❤️ I’m so sorry for all of your pain - sending all the love and hugs to you. I hear you and see you Cassie 💖
Indeed, I also hate when people have compassion with me. I only want they believe me. In a way it feels so liberating to hear others talking about the same pain and struggles.. it brings the understanding that you cannot ask from anyone else. It empty the 'frustration basket' for a while. Thank you for your effort on this video❤
I started out with depression, anxiety and PTSD, so when my physical symptoms started showing up I got bounced from therapist to therapist to psychotherapist to psychiatrist etc etc. Now, I want to clearly state that I love the relationship I have with my current therapist. He is great and therapy helps so much. But therapy can't fix the physical symptoms from my chronic illness. So after years of trying antidepressants and every therapy out there, I had one psychiatrist who asked me if I had a certain lab work done. I said no, why would they need to check my bloodwork? Turns out I have an autoimmune disease that could've been diagnosed in an afternoon by a 2 euro blood test..... Just no doctor ever thought to check it because my physical symptoms were always written off as psychosomatic. So now I am on meds, hoping that this at least resolves some of the symptoms I've been experiencing over the past 4 YEARS. I'm 22, so 4 years is pretty much my whole adult life lol. My symptoms have gotten so bad over the past couple of years that I had to take a gap year out of uni. I have had to put my life on hold for the past 2 years to try and figure out what's 'wrong' with me. And it was as simple as 1 little blood test. It's infuriating. On another note, I am so glad I found your channel. I've recently started using notion and I wanted to encorporate some type of symptom tracker since I've been experiencing more and more migraines (I'm up to 4 migraines per month now, with every migraine it's 2-3 days where I'm physically unable to do anything, so I need a doctor to get on this ASAP). Sorry for that rant. But I feel like this is a safe space to get it all out and write it into the ether.
I have several stories that are awful too, it took me 12 years to get my hEDS diagnosis, my other illnesses took less time, but my POTS took me 8 years to get that but that number is based on when I learned what that word even was, I had several years of symptoms not knowing what hEDS and POTS, Gastroparesis, Chiari Malformation, as well as my Hashimoto's. I have so many stories. please be kind to us. I wish I could say it has been a "good" experience... but I can't. Sending love to all of you!!!!!
The treatment one annoys the hell out of me, been told I can’t possibly be “that bad” since it wasn’t diagnosed until I was 17. My symptoms started impacting my daily life at 5. I have a notoriously bad record of school attendance b/c I couldn’t get myself to go, and in high school I’d be lucky to get to school two days a week. Hell, the doctors didn’t even do the diagnosing, I had to get private genetic testing by myself because they didn’t want to test me for any genetic diseases. Turns out I have a rare form of Ehlers Danlos and since I don’t present like an hEDS patient they wrote me off entirely
I’m still in the process of getting more things diagnosed too. Had extremely bad intestinal issues since I was a baby but just this week was my first ever endoscopy b/c every other doctor thought it was just poor diet.
Thank you so much for this one and all of your videos, you're doing a great job and your efforts are really important to this community! Thank you for not giving up. Your videos help me, make me feel validated and way less alone. Regarding to the video, another misconception I'd add, is the "you're faking being in pain to get drugs and painkillers". It's so infuriating you have to try to convince the people that are supposed to help you about your issues, like as if all of this sht show wasn't enough, you have to defend yourself all the time from ableist idiots and gaslighters ughh
Yup. To all of this. I'm self diagnosed autistic (because it's almost impossible to get an official diagnosis for adult females) and I have some sort of autoimmune disorder who I have seen multiple specialists for and no one can tell me what it is. They all agree I have something but they don't know what it is. I have had symptoms for 15 years and it has recently become a visible thing so my family finally believes some of it. At least there's that. I just wish I had a way to feel better, every day is a chore just being alive let alone living. Stay strong friends.
I had someone tell me not that long ago that so long as I have all my arms and legs then it can't be that bad. I am not sure why they even felt the need to say it. All I was doing was waiting for staff to do a price check on an item I had that didn't have a price tag. I was in a good mood, waiting fairly patiently and it wasn't a big deal. It was probably meant to be one of those chin up, no big deal, nothing to get worked up or worried about which it wasn't. I wasn't making a big deal about it so it was a completely un-necessary remark but that one remark immediately soured my mood. I told them to live with a chronic illness for a few years and see how they coped. Not only was this invalidating but also kind of insulting for amputees, paraplegic and quadriplegic people. I do wish people would think about what they are saying before blurting out stuff that's really not helpful or even necessary. I am still not sure why they felt the need to say anything at all to me, a complete stranger they knew nothing about.
Amazing and do you know? I just cried listening to those misconceptions, because remembered that this is my daily life and at the end of the day I just have to smile... Thanks for sharing this 💖
as a queer and neurodivergent spoonie, you are keeping me going so much at the moment. I have been watching all your videos to try and help me get through life as a student with chronic illnesses. I'm going to start sending this to people who say these things to me from now on, this is how im going to make people understand because you explain it so well. Its so helpful to know someone understands and is fighting for us to have some level of decency and understanding, you are doing such amazing work x
Cassie thank you so much for your video’s. My husband has CFS. We’re 2 years in. I did not anticipate how much I’d have to field these misconceptions, when they come from the closest people it is the worst feeling! I tend to tell people up front about how he is in hope I can snuff out any burning ableist comments before it gets to him. It’s work.
Thank you ❤. Very informative!! I'm a near death Covid survivor with Long Covid. Chronic fatigue one of my more frustrating symptoms. Learning about Spoonies every day.
so many gems! I hate insurance it’s so true!! You need insurance to work but there’s only certain jobs we can do, and they may not pay as much or the insurance sucks and if you work AT ALL you no longer qualify for medicare or medicaid or ssi or ebt. I’m so glad I found a job with benefits that works for me and my family helps me a lot but I can’t imagine how much harder it is for the people who don’t have support !
Cassie l love you at last some who understands what it feels like not to be believed when your feeling really sick. Those people aren't true friends and such an attitude is unforgivable
According to my doctor (that gave me my POTS diagnosis) it took me about 20 years to get my POTS diagnosis and to get treatment. I'm on medication now but I still have my symtoms and feel like crap.
It’s actually embarrassing, because I feel like people feel sorry for me pity or they think something is wrong with me and they look down on me. I wish I could become invisible when I start feeling sick in public LOL or feeling pain
Oof. Being symptomatic in public causes me SO MUCH anxiety. Never knowing if I'll be met with compassion or shame is so awful. It would be magical to only have to worry about my physical symptoms instead of navigating social dynamics.
Even if a disability is due to something one did (like crash a car or something) it doesn’t make them less worthy of dignity and respect. And possibly they should get an extra dose of empathy.
Thank u so much for this video. Girl I’m cracking up because all of this is so true. I suffer from chronic pain and I am literally delirious with pain u can only laugh at this ridiculous treatment of people with chronic illnesses.
4yrs/9 Dermatologist/5 Primary care Dr's and multiple specialists soooo many labs & still searching for someone to diagnose/treat me....live alone, haven't been able to work in 4yrs and quickly getting worse....have not had one good day this whole time😒 It is a FRICKIN NIGHTMARE!! Got MSSA (STAPH) from catheter for 5wks, then Valley Fever, then think Parasitic infection, and created skin infection and is all the moron Drs want to say is I'm a "delusional picker"! Are you FUCKIN kidding me?? I'm literally dying over here and no one will listen😭🙏🏼🙏🏼💔
I currently have somewhat stable severe chronic asthma. I had symptoms of wheezing at age 6, (which I described to my mother as my lungs singing to me at night). She disregarded the information. Had several clues that I wasn’t breathing well but I was not diagnosed at all until age 31. Even with treatments for allergies, I gradually continued to become more ill. Finally had to quit work at age 54 as stress would put me into a tailspin. Then my lung doctor would ask me every appointment about whether or not I was working. Fortunately I switched doctors to one who tested me and treated me more aggressively so that I was not spending my life staring at the wall and using all my energy to breathe. Things are slightly better for me, but some damage to my lungs is permanent. And it is very easy for things to get off kilter.
Number 6: actually finally proved to my therapist my disability isn't just my mental health when I had multiple good mood days and my body was still in pain and I was still having digestive and cardiac problems! Yes, stress makes it worse and no that doesn't mean removal of stress is a cure. For frights sake, a day of rest isn't going to make atrophied muscle grow back! Also, the spiritual BS is so much worse amongst pagans ime. Though we're also more likely to be both disabled and pagan 🤷🏻♀️🤦🏻♀️
Just lost my mum to severe ms no treatment was given I we have Asperger's add and heds albeit mum undiagnosed myself awaiting genetic testing take a look at cleanse to heal
I am currently 23 and have had these symptoms as long as I can remember so at least 10+ years likely way more and am only now starting to have vague hints begin to surface at whats going on. Part of the issue was that I normalized symptoms that I shouldnt have due to my parents. Only recently did I even realize that my symptoms werent normal.
Get rid of all the symptons is too much to ask for I guess. But a comfortable life (in my own way) and comfortable enough to been able to enjoy life a bit, that is what I wish for myself. But I also wish that for all of you. ❤
I’m from Oregon, now living in Illinois (11 years). I’m so sorry the doctors were so horrible to you. A year after we moved here to the Midwest. The doctor I saw said my symptoms were because I was depressed that I moved so far away from my family. 🙄 I have have ME/CFS, POTS, hypermobility, fibro, chronic migraines, and recurrent SIBO. Today was a full body migraine. 💩
I was a long distance runner in 1999 i was 43 and was in the best shape of my life and then I started getting sick and after 25 years i'm still sick. Many issues but SIBO is the main one and I can't get rid of it and NO DOCTOR can help. Most have ZERO understanding of it
As you all know how the ER goes... its worse in the states compared to canada or across the pond in some places... I have on several occassions been turned into a pin cushion and even then I have still not had it explained to me why no matter how much water I drink my veins will auto collapse which has left me with severely scarred tendons, unstable wrists, and scared veins. I once even had a nurse insert and then walk off with out changing the you know what to the iv plastic tube!!!! I had to hold my arm straight for 30 minutes calling out for a different nurse or doctor to come finished the job blindly trying to dodge my arm being bumped by passing patients and beds and cleaning crew..... I was terrified and ran a real risk of infection.... and yes my entire arm was a bruise for weeks after each event of that.
Children don't have control over their medical care. Doctors told me it was all in my head. I didn't receive a diagnosis that would allow treatment until I was 29 years old. Don't gaslight me
@@CassieWinter I was quoting doctors/parents. I've heard the same thing said to me over and over, before finally, after years of being ignored and ridiculed, when irreversible damage was already done, not being diagnosed for 1 chronical illness, but 3 (4th one pending). Guess who's fault it was I remained undiagnosed for so long? I should have taken more action as a 12 year old. I know a thing or two about gaslighting.
Married to a personal trainer. My body just fell apart in my 40’s and I want to scream lack of exercise didn’t cause these disorders nor will it fix them!! I’m always tired, I’m not lazy and messy. Between the disorders and med side effects I feel bad literally every day. I don’t take all these meds recreational and that too is not what is making me sick. My ex husband would say there’s nothing wrong with you, you just like those pills. Mine are bad mentally and some physical but I look normal. 😢
I'm 21, started seeking out a diagnosis at age 6 or 7. I'm still undiagnosed. I suspect that I have hEDS and POTS but doctors have gaslit me for my entire life so I'm not even sure if or when I'll get a diagnosis...
Also the other thing I wanted to mention is in my prior comments I talk about not being able to do traditional work..... where a lot of my masking came from is in traditional work you have very ridgid scheduling requirements (for good reasons like you gotta make sure your staff is there at the coffee shop, i get it.) that were inaccessible for my disabilities. I had talked about my horrific sleep schedule.... It is very very hard to perform quality work when you phsycically cannot acheive sleep for 48-72 hours despite sleeping pills and meditation and just lying in bed for endless hours.... Would you want your surgeon to be that tired?
I don't know if I've heard of that one before but it's so insane that doctors will gaslight you into saying you're pregnant, especially if you're really young, genuinely what the fuck is up with doctors
_Below is somewhat of a vent comment_ Hi, I am in a similar camp. But I have trouble using the word disabled for being impaired or differently abled because I have the privilege of perceived intelligence. I'm not believed by other neurodivergent people either because I cope well, but I am too weird for neurotypicals. I was put into mainstream school despite some resistance from the school administration, thus I was never given accommodations even when I needed them. I feel similar regarding intersex conditions (aka DSD) and hormonal issues (this which I have), in the way there is a difference that I don't feel good about comparing myself to someone who didn't have the blessings I enjoyed for a lot of my life. I was never given slack as a kid for having body coordination and sensory issues. I was bullied by my family and strangers for every little thing. Suddenly, I am getting diagnosed with so many things when I got a job and my insurance covers going to doctors until they offer real help. I collect issues like pokemon and I really can't handle it without multiple antidepressants because it drives me to want it all over.
After 10 years of chronic pain and illness, I was diagnosed with fibromyalgia, which I don't think covers the full extent of what is going on. At that point, I got some medications that helped a little bit, but not enough to where I could go back to work. I'm at 18 years now, still trying to find the right diagnosis and treatments. It's exhausting.
That sounds really tough. I'm not sure the exact difference between CFS and fibro, there seems to be a lot of overlap. Sorry you have been through that for so long.
@@morrisnakes yes seams to me the Asperger's causes mcas most of us have OCD as children which is already the mcas at work my son now has that and add Asperger's and now not at school they don't no what to do with him and awaiting home schooling.ive just lost my mum to severe ms obvously had undiagnosed Asperger's and heds a pure perfectionist miss her so much.have you found anything that helps ime going try a tmj jaw splint next even though I don't have tmj anymore.
@@Truerealism747 I've had the most luck by working really hard on my diet and exercise even when I feel horrible. Easier said than done when I'm in pain, but if I can stay on top of those, it seems to really cut down the amount of days I'm suffering as bad.
Lets not forget that the magority of doctors who will even be willing to diagnose you on paper (as most support services cannot accept a verbal diagnoses which is already hard enough to get even when you are holding hte test results in your hand that clearly indicate.... -deep breath- _ its usually they walk into the room and say something like " Oh yes, you do have POTS. Bye. heres a pamplet eat salt. : there is very little treatment either available or if available its not provided. What I want to know is where is the overseer for medical practice? Where is the enforcement of medical practices? Sure we can sue for financial damages... but where are the criminal charges? Do no harm does not equal passing me off for the last 15 years do various different doctors and not doing a single session of actual treatment.....
I have hashimoto's (most likely, as it's most common) and although diagnosis was quick, the synthetic thyroid meds never ever made me feel any better, not in 15 years! And no other investigation or intervention is available, despite me pushing for it (I'm in the UK)
The opposite of disabled is not able..... its ENABLED...... If there were ramps and elevators in every single building with accessible washrooms and kitchens and counters etc. People in wheelchairs would be ENabled.... not disabled. If we provided work with truly flexible hours and more emphasis on supporting independent businesses people with seizure disorders would not be fired for being ill. Even with FMLA that is limited- too limited and even then its just a legal job holder youre not getting paid for that time away! Some of us arent even at home all day as some of us live in hospitals!
The best way to talk to me is by scheduling a Zoom call, which you can do so by using this link: app.acuityscheduling.com/schedule.php?owner=16161520&appointmentType=7959991 If for any reason that doesn't work, my email is cwinter@accountabilitymuse.com
Ive noticed youve said that chronic means all day everyday, I hope you are incliding fluctuating symptoms with that since good episodes can happen as well and it still means someone is chronically ill
And unfortunately also no more "engagement" to tell the algorithm to keep pushing my video. As a small channel, every bit of engagement helps, even the bad stuff.
Sending all my precious Spoonies the love and support they deserve. 💖💖💖
You rock so hard Mz. Winter.
This channel - your sincerity, your care, your knowledge, and your (unfortunate) understanding - are a soothing, sweet salve, in a decades long coriolis of burns and cuts (and let's be honest - gouges and stabs too).
I am meandering through your videos at a pace my spd can actually digest. And I am digesting *deep*.
I know you know, but it bears repeating: you're doing incredibly helpful, much MUCH needed work. What you're doing is a not small part of moving the mark forward for spoonies, atyps, and disabled folks, FOREVER. I hope you have a big shiny sign in your house somewhere that reminds you, or flips through thanks from your muses and grateful internet folks out here. :)
Looking forward to more of your presentations, and hopefully eventually to actually having a chat and learning more about your programs. In the meantime, wishing you (and any spoonie/atyp reading this) an endless supply of the "fuck it" that is necessary for disabled holidays. And a real strong shield against the inevitable increase of (mostly) well meaning, hurtful comments and actions.
And may we all still be here for the new year 💛
When your older children don't understand and still think your wonder woman😢
"Often we faking being well"
wow, that is profound and very true. Thank You
"Maybe it's just you" "there's always something" "what is it this week?" "Have you been drinking enough water?" "you just need to eat healthy and exercise more" "get into yoga" "you should try meditating" "it's all in your head" "you're just stressed" "you've been in bed all day that's why" "you've had all day to do blabla" "you'd feel better if you got out of the house more" "you don't help yourself" "it could be worse" "it can't be that bad because you're still here" "the doctors would know if there was something wrong" "who's the doctor you or them?"
Thank you so much for this video. You have voiced what so many of us feel.
I am an outlier that got diagnosed with POTS pretty quickly after symptom onset. The only reason I was able to achieve a diagnosis so quickly was because I am a healthcare worker that works closely with cardiologists and intensivists. Their respect for me as a coworker meant they listened to me and took me seriously. I have other health problems that I’m currently in the process of trying to get diagnosed so I can get treatment. I did not disclose my occupation at the ER recently and was treated horribly by the doctor until my labs came back verifying what I was saying and his treatment and tone changed REAL quick. I see it at work all the time… people in the medical field can become so incredibly jaded and it’s really unfortunate. All we can do is continue to advocate for ourselves until we are blue in the face. Don’t ever stop advocating for yourself!!
I was treated as if I was just a whiny hypochondriac until the test I put my foot down and requested came back very very low, confirming the diagnosis I tried to sway the doctor to. Now I am treated so much better and actually listened to when I say something hurts🙄
Going on 15 years myself, still undiagnosed while my symptoms get worse 🙃
I have been in the same situation for over five years now with 24/7 headaches and sensitivity to light, sound, and touch along with additional symptoms. I hope that we will both eventually get the answers we deserve. Thanks for sharing.
I am feeling that "pretending to be better than you are" so much. I am so afraid of telling anyone outside my very closest, most trusted circle that I am struggling, to the point where I find myself lying to my doctors. Which is... so counterproductive. But when the doctor asks "how did you do" I find myself saying things like "oh it wasn't *that* bad" - meaning, hey, I managed to get out of bed most days this month, but the doctor of course can't read my mind, and know that. That's the reason I need a neutral party to accompany me to the doctors office, because the second a doctor suggests "maybe it isn't that bad" I will cave in and lie, just because of this deep seated fear of being considered "whiny" and "a hypochondriac".
Same!
I agree with everything you've said in this video, being chronically ill comes with so many hurdles and I wish doctors, strangers, and even FAMILY MEMBERS would just stop being part of the problem, stop being judgemental, and stop being a pain in my damn behind 🙄
I am sorry for your experience, I remember being mentally ill at 13 and not one adult believing I had a problem, I believe this is because of ignorance and gaslighting related to gender, because I was a little girl, what would I know? So my pain went unseen for so many years, it does hurt that this type of experiences happen to us and yet there are people out there saying this is all fake
Same here, I had severe ocd as a child, literally since I was a toddler ive shown signs and family just chalked it up to my quirks 🤦♂️
My first symptoms started at 15. I was diagnosed with fibromyalgia at 50 by my new doctor (DO) who was fresh from residency. I got lucky and the first medication she prescribed worked great (Cymbalta) for a few years. Now 4 years later I’m in a flare and on FMLA and don’t know if it’s even approved yet which means if they don’t approve it, I could lose my job. Fun week ahead for me. Wish me luck.
ME/CFS RUINED my lifetime ambitions to go into the medical the field. The counselor at the dept of vocational rehabilitation insisted I was just suffering from depression and I was faking the very real physical and cognitive symptoms despite my valid diagnosis by a medical doctor who was knowledgeable in diagnosing and treating the disease just because I wanted to go into nursing. That doesn’t make a bit of sense because the disease was robbing me of what I MOST wanted to do since I was a child!!! She fought me tooth and nail on the reality of my many symptoms and some medical signs consistent with the disease as well. I was really put through the grinder by this horrible person!!! Who in the world would EVER want to endure such a nightmare!!! As you know this is only a small bit of the kind of mistreatment we are forced to endure at the hands of ignorant and unscrupulous people who have the responsibility to help us! Dealing with people who are paid to help you with this disease is a nightmare! And then there’s the actual suffering and disability that it causes as well. Yes, you DO pretend that you are much better than you actually are in order to avoid the criticism and down right abuse of those who are being PAID to help you. At best you are dismissed. NO ONE would deliberately do that. It’s a very painful reality that we face daily. ☹️
Pppppp0pp
I felt this so hard. I cried and let it out. I am going share this with all my spoonie clients.
That means a lot to me. Thank you for sharing the video, Geena. 💖🤗💖🤗
Had my first symptoms at age 8. Mother (checkbook in hand) told the doctor, "tell her there is nothing wrong with her! She is just being dramatic!" Two years later, passing out at the same time every day, same thing. I've had surgeries and mutliple diagnoses, but my mother's "you're just dramatic and lazy" was so loud in my head I couldn't get past it. Now that my children are being diagnosed with genetic conditions, I'm beginning to realize it hasn't been in my head this whole time. Medical gaslighting is real and very harmful.
Big hugs 💖
I love your videos adhd since 8 poss. Pos audhd. Ulcerative colitis 18 years chronic pain and fatigue for 14+ years. Just started Humira injections for enter…? Arthritis from/linked to UC. Even if you can’t help me get shit done thank you to you and your muses 😭I’m crying so hard 🤦🏼♀️🤣. Thank you I’ve always felt so alone and hypochondriatic? Also pos. EDS and POTS . I genuinely wondered if I was possessed at one point 😂. Every single diet including AIP 😩 also I drive heavy truck and operate heavy equipment because I sit. Getting in & out, up & down, I have to be very careful. The great thing is I learned young ish and it can be very autopilot on my bad days, very stimulating but I’m alone so also calming. Also blasting music and singing at the top of my lungs and driving stuff so powerful and dangerous really seems to help … something . Thank you again
Thank you for this video. As a mother of an adult disabled daughter and grandchild, I cannot thank you enough, Keep going, you are really helping disabled people and their carers to communicate and understand.
Boy, you’ve got this nailed !
The one I get a lot is people wondering why my parents take care of my kids during while my husband is at work since I stay home. I already feel like a failure as a mom because I don't have the energy and have to depend on my parents so much to take care of my kids, but then to have people look at me weird or imply that they think I'm lazy or something because of it just cuts so deep.
You're NOT lazy. And I'm so glad your parents are able to help you care for your kids. 💖
I really feel you. I am a 30 year old guy who ‘looks well’ but has had reasonably severe M.E./CFS for just over a year. I really struggle that everyone still sees me as a fit and healthy young and able guy. I hold people up in shops, forget everything and get so muddled and can’t commit to anything. I am no longer able to work yet most of my friends and family don’t understand at all and say really hurtful stuff (without meaning to be mean). Don’t beat yourself up or compare yourself to others. I really don’t know how to deal with what people think but know you are not on your own!
So many important truths here! 👏🏻👏🏻❤
I have really had to harp on the fact that we typically fake BEING WELL, even though the media would love to make normies think we are actually faking being sick….
You call attention to this fact and the fact that we DONT want to be seen as sick. I wish there was an easier way for us to get this obvious (to us) fact.. Oh well…
((BTW let me know if you ever want to collab ❤️ No pressure, but I think it would be fun! ))
Thanks for the awesome video. 😊
Hi! So nice to meet you. 🤩 Could you email me a couple of your videos that you think really highlight you and your work? I'm low on spoons and I don't want to forget to check out your channel, and having an email in my inbox would help with that. 💖 cwinter@accountabilitymuse.com
@@CassieWinter nice to meet you as well 😊
Sure thing. I have never done a collab before, but I can send you two or three videos that I think sum my channel up. 👍🏿
EDIT: Annnnnd sent!
I'm now 69 years old, and I have had symptoms of EDS from early childhood. After all these years, I find a PCP who has vast personal experience with EDS and was willing to talk about it and my medical and surgical history. Imagine that. I cried 😭😭 big time! I told him about my family medical history and he has been a much needed help, along with my neurologist. I'm thankful I've had access to wonderful and kind surgeons over the past 40 years. Even some who held my hand in silent prayer! I hope that more doctors educate themselves and pay attention for early signs of Ehlers Danlos Syndromes.
felt this whole video in my soul lmao. took me years to find a doctor who wouldn't just look at me and the chronic pain and fatigue i've dealt with since i was 15 and tell me "you just need to lose weight and exercise more." turns out no amount of increased exercise or diet is going to help if you just keep injuring yourself/getting sick because you actually have POTS and hEDS and your collagen don't collagen so good 🙄🙄🙄
it’s so sad when religious people say that because imagine the babies that are born with physical disabilities
Well this is false. As one of Jehovahs witness the bible teaches we inherited sin from our first parents Adam an Eve thats why we get sick
@@shawnmcanthony5724And that is objectively false and harmful
Thank you for speaking up for so many of us who are too afraid to speak up. This is inspiring ❤
Ive been thinking of getting a rollator for PoTS, but internal ablelism loves to haunt my mind, I’m not exactly the main demographic for it if you get what I mean. I mean I’m 22, if I get one I’d just be stealing it from a old person who deserves to have it much more than I do…
You would not believe the comments I’ve gotten for the past decade and a half, even irl ones that basically confirms all my internal ableism thoughts, like the stealing from old people one, I’m too young to be sick, I don’t look sick (visually) and hell for 16 years doctors have basically done every test under the earth for anything relating to my pots and fibromyalgia and they find literally nothing wrong with me, I even had to endure a very painful spinal fluid test only to get the only answers I always get, everything is fine you have nothing wrong with you… so yes I’m self diagnosed and trust me I get enough comments like I’m a faker and shit enough for that alone….
i feel this. for a good 5 years something hit me out of no where when i was 30... im starting to see my bad life habbits beer and junk food finally caught up with me. im prob 30 pounds over weight not alot but i got railed off the tracks im still figuring out what it is. but non the less im exhausted mentally and physically and if someone talks to me i always hide it to look normal and not draw attention to myself.
"We are faking it to be well"... that is soooo right ❤. Well said. I feel you! Some moments on a good day/or only hour I even feel ashamed if I look better than normal.
❤ you cassie, thank you for saying everything that i feel and validating that
"Faking being well". Thank you for that.
thank you. today has been so demoralizing. this video is just what I needed. i felt all alone and hated. it is affirming and validating for me to hear your words
My life is very definitely not worth living. My circumstances are so bizarre that I can not describe them to others without getting accusations in return, and this is on top of the Chrionic disease. Nobody can hold a conversation anymore and there are no adults present in the room.
Watched a few of your videos today. I’m glad I found you. I’ve been gaslit my the medical field for decades. In fact, since I was a kid. I’m desperately trying to figure out wtf is wrong with me because I know it’s not possible for all these symptoms to persists this long and be unconnected. I will keep searching and supporting channels like this because it helps people like me, us. Thank You 🙏
Thank you for doing this, big hugs to you. I checked out your other video for the comments. Wow, some people! It took me 10 years to be diagnosed with joint hypermobility syndrome. It took one NHS nurse at the pain management clinic. Many doctors had no idea. My one at the time didn't know about the clinic but thankfully he referred me anyway after I asked to be.
@18:22 Until you meet someone who does fake it, which I have unfortunately. They are out there. I'd rather believe people and be wrong once in a while than hurt a bunch of people who are telling the truth though like you said. It's a really terrible sort of person who would make up things like this for sympathy and attention, and they do so much damage for those of us who are actually experiencing the symptoms and traumas we talk about. I feel like the universe should give them the things they claim sometimes so they can see what the people they are hurting by ruining credibility have to go through. :(
I totally get it. I'm diagnosed with Interstitial Cystitis. It took me 8 years to get a diagnosis and treatment. I actually went to the doctor that diagnosed me dispite my medical insurance being out of network at that time. I've been through literally hell on earth.
All these are so so true! (sadly!) - its so frustrating and makes life so much more challenging when you're already dealing with so much. Thank you for challenging these and raising awareness!🥰
And thank you for watching! 🤩
My kid moved back to the states after living in Vancouver B.C. for several years. She couldn't believe how bad our for profit medical system is.
Thank you so much for sharing this! 💛 I appreciate your courage and your heart. I'm almost 45 and it took 26 years to get my diagnosis. I have EDS, Dysautonomia (at one point it was autonomic failure), small fiber neuropathy, mast cell activation, and ataxia from encephalitis. In the past I was diagnosed with epilepsy, endometriosis, extremely early menopause at 36, telangiectasia in my brain, dislocated tailbone, and arthritis. I've been disrespected and dismissed by numerous doctors and specialists and have numerous close family members that didn't believe me. They all believed I had a mental health problem and talked people out of being there for me while I was in the hospital. I was abandoned when I needed them the most and it hurts more than anything I've ever endured. I realized that I need to find emotional support somewhere else. So, I'm going to join some chronic illness communities and share with them instead of my family. Chronic illness can be a very lonely place to be. So, I'm very grateful that you're spreading awareness. I need to get the courage to create videos as well. Thank you for the inspiration! 🌻 Sending you lots of love!!!
Thankyou so much , this was so relatable. Brilliant.
I’d love to be able go out more.. thank you for a great video ❤️
Stepfather of a (and full time patient advocate for a ) spoonie here, let me applaud you for your work, for your courage, and your willingness to be vulnerable. I often accompany her as she interacts with society and observe first hand the reactions of overt discrimination (especially medical "professionals"). And it is usually her who restrains me from expressing my outrage at the ignorance, and gaslighting.[Wanting to avoid bad outcomes - I just want to verbally (sometimes physically) react vs her more rational and much delayed responding).
It was 5 years before she was properly (partially) diagnosed (she too was misdiagnosed w/ IBS) and even then we were not informed until we demanded the ER hospitalist read her charts before discharging her w/o treatment. He then informed us that 3 months earlier her GI Dr. recorded that he had tested for and "confirmed Gastroparesis (but) of unknown cause. (It was then we began the battle with insurance to authorize treatment--took 6 months and were only successful after changing insurance providers).
I admit that sometimes even I succumb to some these misconceptions (it is REALLY hard to wrap one's head around "Chronic", that this is NEVER going to stop, that she is NEVER going to NOT be ill, that the BEST we can hope for is LESS, less frequent flares, less pain, just less, never NO..., just less.) So thank for this reminder, it helps.
Feedback on the production: The font on the slides is too small, even when I pause the video to read, the positioning of the pause indicator; the double bar, prevents being able to read what is displayed.
You’ve set me free with this video. Thank you. 😭 ❤️ 🙏🏼
You are so welcome
2:01 First of all, your makeup is beautiful Cassie! ❤️❤️ Love that your empathy and compassion for fellow spoonies shines through in all your vids. Thank you for touching on how we push through pain - I’ve gotten so much of this from family especially. It’s almost praised by them each time I push through the pain, even though it hurts me so much to do so. Meanwhile they think I’m ok if I’m pushing through or I don’t say anything about the pain I’m in. Never invalidate your pain or let others invalidate your pain. When I bring up my chronic pain and talk realistically about it, I get labeled as being negative or get told by my family I just need to trust God more. And good Lord, yes! Don’t get me started on the whole “if you’re sick, then you must be sinning and causing God to judge or curse you”. 😡 I’ve been asked if I wasn’t tithing or if I had been doing something wrong like my sickness is my fault. I don’t think it gets touched on enough with the religious trauma on top of the chronic illness. Then after all the different tests and doctors trying to figure out what’s causing all the pain, they said the tests came back clear and I’m perfectly healthy, but excuse me, I’m the one living in my body with excruciating pain on the daily. Sometimes I wish those who are able bodied could spend just one day in the life of a spoonie - they would be put to shame for viewing us wrongly. Thank you Cassie for validating my pain - I felt seen and understood for the first time in my life. Your video brought me to tears, finally someone who understands 🥺❤️ I’m so sorry for all of your pain - sending all the love and hugs to you. I hear you and see you Cassie 💖
Sending you lots of love and hugs back! 😍❤️
i am so sorry you get hate for helping viewers. i needed your support today. thank you for being here
Thank you, that means a lot to me 😍
@@CassieWinter ❤️❤️❤️ you are a sweetheart. You made a dark day brighter by responding to my comment
Sooo true!!! Just found you today. Yippee!
Welcome to the community!
I have never felt so seen in my life.
At 22:48 THIS IS THE TRUTH!!! I had not realised this so clearly before you said it! Thank you so much!!!
Indeed, I also hate when people have compassion with me. I only want they believe me. In a way it feels so liberating to hear others talking about the same pain and struggles.. it brings the understanding that you cannot ask from anyone else. It empty the 'frustration basket' for a while. Thank you for your effort on this video❤
I started out with depression, anxiety and PTSD, so when my physical symptoms started showing up I got bounced from therapist to therapist to psychotherapist to psychiatrist etc etc. Now, I want to clearly state that I love the relationship I have with my current therapist. He is great and therapy helps so much. But therapy can't fix the physical symptoms from my chronic illness. So after years of trying antidepressants and every therapy out there, I had one psychiatrist who asked me if I had a certain lab work done. I said no, why would they need to check my bloodwork? Turns out I have an autoimmune disease that could've been diagnosed in an afternoon by a 2 euro blood test..... Just no doctor ever thought to check it because my physical symptoms were always written off as psychosomatic. So now I am on meds, hoping that this at least resolves some of the symptoms I've been experiencing over the past 4 YEARS. I'm 22, so 4 years is pretty much my whole adult life lol. My symptoms have gotten so bad over the past couple of years that I had to take a gap year out of uni. I have had to put my life on hold for the past 2 years to try and figure out what's 'wrong' with me. And it was as simple as 1 little blood test. It's infuriating.
On another note, I am so glad I found your channel. I've recently started using notion and I wanted to encorporate some type of symptom tracker since I've been experiencing more and more migraines (I'm up to 4 migraines per month now, with every migraine it's 2-3 days where I'm physically unable to do anything, so I need a doctor to get on this ASAP).
Sorry for that rant. But I feel like this is a safe space to get it all out and write it into the ether.
You said everything how I feel
I have several stories that are awful too, it took me 12 years to get my hEDS diagnosis, my other illnesses took less time, but my POTS took me 8 years to get that but that number is based on when I learned what that word even was, I had several years of symptoms not knowing what hEDS and POTS, Gastroparesis, Chiari Malformation, as well as my Hashimoto's. I have so many stories. please be kind to us. I wish I could say it has been a "good" experience... but I can't. Sending love to all of you!!!!!
The treatment one annoys the hell out of me, been told I can’t possibly be “that bad” since it wasn’t diagnosed until I was 17. My symptoms started impacting my daily life at 5. I have a notoriously bad record of school attendance b/c I couldn’t get myself to go, and in high school I’d be lucky to get to school two days a week. Hell, the doctors didn’t even do the diagnosing, I had to get private genetic testing by myself because they didn’t want to test me for any genetic diseases. Turns out I have a rare form of Ehlers Danlos and since I don’t present like an hEDS patient they wrote me off entirely
I’m still in the process of getting more things diagnosed too. Had extremely bad intestinal issues since I was a baby but just this week was my first ever endoscopy b/c every other doctor thought it was just poor diet.
Thank you so much for this one and all of your videos, you're doing a great job and your efforts are really important to this community! Thank you for not giving up. Your videos help me, make me feel validated and way less alone. Regarding to the video, another misconception I'd add, is the "you're faking being in pain to get drugs and painkillers". It's so infuriating you have to try to convince the people that are supposed to help you about your issues, like as if all of this sht show wasn't enough, you have to defend yourself all the time from ableist idiots and gaslighters ughh
Yup. To all of this. I'm self diagnosed autistic (because it's almost impossible to get an official diagnosis for adult females) and I have some sort of autoimmune disorder who I have seen multiple specialists for and no one can tell me what it is. They all agree I have something but they don't know what it is. I have had symptoms for 15 years and it has recently become a visible thing so my family finally believes some of it. At least there's that. I just wish I had a way to feel better, every day is a chore just being alive let alone living. Stay strong friends.
Big hugs 💖
I had someone tell me not that long ago that so long as I have all my arms and legs then it can't be that bad. I am not sure why they even felt the need to say it. All I was doing was waiting for staff to do a price check on an item I had that didn't have a price tag. I was in a good mood, waiting fairly patiently and it wasn't a big deal. It was probably meant to be one of those chin up, no big deal, nothing to get worked up or worried about which it wasn't. I wasn't making a big deal about it so it was a completely un-necessary remark but that one remark immediately soured my mood.
I told them to live with a chronic illness for a few years and see how they coped. Not only was this invalidating but also kind of insulting for amputees, paraplegic and quadriplegic people. I do wish people would think about what they are saying before blurting out stuff that's really not helpful or even necessary. I am still not sure why they felt the need to say anything at all to me, a complete stranger they knew nothing about.
I've been in similar situations and couldn't agree more. Most people simply don't understand or seek to understand, and it's harmful. Sending hugs 💖
Amazing and do you know? I just cried listening to those misconceptions, because remembered that this is my daily life and at the end of the day I just have to smile... Thanks for sharing this 💖
as a queer and neurodivergent spoonie, you are keeping me going so much at the moment. I have been watching all your videos to try and help me get through life as a student with chronic illnesses. I'm going to start sending this to people who say these things to me from now on, this is how im going to make people understand because you explain it so well. Its so helpful to know someone understands and is fighting for us to have some level of decency and understanding, you are doing such amazing work x
Oh my goodness, thank you so much 💖 I'm so glad my videos have helped you. And P.S. I'm queer, too. Gray Ace. 💜
Corvidgoblin could you tell me what a spooning is plesse
When you count your energy with spoons
Cassie thank you so much for your video’s. My husband has CFS. We’re 2 years in. I did not anticipate how much I’d have to field these misconceptions, when they come from the closest people it is the worst feeling! I tend to tell people up front about how he is in hope I can snuff out any burning ableist comments before it gets to him. It’s work.
Right? It's so much emotional labor. Sending you love and hugs
Thank you ❤. Very informative!! I'm a near death Covid survivor with Long Covid. Chronic fatigue one of my more frustrating symptoms. Learning about Spoonies every day.
so many gems! I hate insurance it’s so true!! You need insurance to work but there’s only certain jobs we can do, and they may not pay as much or the insurance sucks and if you work AT ALL you no longer qualify for medicare or medicaid or ssi or ebt. I’m so glad I found a job with benefits that works for me and my family helps me a lot but I can’t imagine how much harder it is for the people who don’t have support !
OMG never did I think I would I channel that discusses ASD and Chronic Illness together !! I'm so excited to binge your videos 😀 new subscriber 🥰
Cassie l love you at last some who understands what it feels like not to be believed when your feeling really sick. Those people aren't true friends and such an attitude is unforgivable
You made me laugh with your truth telling. Thanks 😊
According to my doctor (that gave me my POTS diagnosis) it took me about 20 years to get my POTS diagnosis and to get treatment. I'm on medication now but I still have my symtoms and feel like crap.
I'm so sorry. I also have treatment resistant POTS and it's awful. Hoping you're able to find at least something to take the edge off. Hugs. 💖
It’s actually embarrassing, because I feel like people feel sorry for me pity or they think something is wrong with me and they look down on me. I wish I could become invisible when I start feeling sick in public LOL or feeling pain
Oof. Being symptomatic in public causes me SO MUCH anxiety. Never knowing if I'll be met with compassion or shame is so awful. It would be magical to only have to worry about my physical symptoms instead of navigating social dynamics.
Even if a disability is due to something one did (like crash a car or something) it doesn’t make them less worthy of dignity and respect. And possibly they should get an extra dose of empathy.
Thank you so much ....
Thank u so much for this video. Girl I’m cracking up because all of this is so true. I suffer from chronic pain and I am literally delirious with pain u can only laugh at this ridiculous treatment of people with chronic illnesses.
I have multiple diagnosis. Took over 15 years
with my tears of being seen, ❤❤❤❤❤❤❤❤
4yrs/9 Dermatologist/5 Primary care Dr's and multiple specialists soooo many labs & still searching for someone to diagnose/treat me....live alone, haven't been able to work in 4yrs and quickly getting worse....have not had one good day this whole time😒 It is a FRICKIN NIGHTMARE!! Got MSSA (STAPH) from catheter for 5wks, then Valley Fever, then think Parasitic infection, and created skin infection and is all the moron Drs want to say is I'm a "delusional picker"! Are you FUCKIN kidding me?? I'm literally dying over here and no one will listen😭🙏🏼🙏🏼💔
Big hugs 💖
I currently have somewhat stable severe chronic asthma. I had symptoms of wheezing at age 6, (which I described to my mother as my lungs singing to me at night). She disregarded the information. Had several clues that I wasn’t breathing well but I was not diagnosed at all until age 31. Even with treatments for allergies, I gradually continued to become more ill. Finally had to quit work at age 54 as stress would put me into a tailspin. Then my lung doctor would ask me every appointment about whether or not I was working. Fortunately I switched doctors to one who tested me and treated me more aggressively so that I was not spending my life staring at the wall and using all my energy to breathe. Things are slightly better for me, but some damage to my lungs is permanent. And it is very easy for things to get off kilter.
Hugs 💖💖💖
Love this video
Number 6: actually finally proved to my therapist my disability isn't just my mental health when I had multiple good mood days and my body was still in pain and I was still having digestive and cardiac problems! Yes, stress makes it worse and no that doesn't mean removal of stress is a cure. For frights sake, a day of rest isn't going to make atrophied muscle grow back!
Also, the spiritual BS is so much worse amongst pagans ime. Though we're also more likely to be both disabled and pagan 🤷🏻♀️🤦🏻♀️
I have MS. First severe symptom (literally lost my vision) in 2014, diagnosed in 2022 and was finally able to start treatment.
Oh my goodness that is awful. I'm so sorry it took you so long to get a diagnosis and treatment.
Just lost my mum to severe ms no treatment was given I we have Asperger's add and heds albeit mum undiagnosed myself awaiting genetic testing take a look at cleanse to heal
I am currently 23 and have had these symptoms as long as I can remember so at least 10+ years likely way more and am only now starting to have vague hints begin to surface at whats going on. Part of the issue was that I normalized symptoms that I shouldnt have due to my parents. Only recently did I even realize that my symptoms werent normal.
thank you
❤ Thank you for this video it is the truth
You just don't get treated better, you're safer if you can mask being well in nearly every environment you go into!
Took traveling to the Mayo Clinic and 21 years later to get a diagnosis. I went to so many doctors and just went round and round in circles.
Big hugs 💖
Get rid of all the symptons is too much to ask for I guess. But a comfortable life (in my own way) and comfortable enough to been able to enjoy life a bit, that is what I wish for myself. But I also wish that for all of you. ❤
I’m from Oregon, now living in Illinois (11 years). I’m so sorry the doctors were so horrible to you. A year after we moved here to the Midwest. The doctor I saw said my symptoms were because I was depressed that I moved so far away from my family. 🙄 I have have ME/CFS, POTS, hypermobility, fibro, chronic migraines, and recurrent SIBO. Today was a full body migraine. 💩
Big hugs 💖
I was a long distance runner in 1999 i was 43 and was in the best shape of my life and then I started getting sick and after 25 years i'm still sick. Many issues but SIBO is the main one and I can't get rid of it and NO DOCTOR can help. Most have ZERO understanding of it
As you all know how the ER goes... its worse in the states compared to canada or across the pond in some places... I have on several occassions been turned into a pin cushion and even then I have still not had it explained to me why no matter how much water I drink my veins will auto collapse which has left me with severely scarred tendons, unstable wrists, and scared veins. I once even had a nurse insert and then walk off with out changing the you know what to the iv plastic tube!!!! I had to hold my arm straight for 30 minutes calling out for a different nurse or doctor to come finished the job blindly trying to dodge my arm being bumped by passing patients and beds and cleaning crew..... I was terrified and ran a real risk of infection.... and yes my entire arm was a bruise for weeks after each event of that.
All that's left for me is depression and nihilism. I don't know where to go from here.
Do you have fybromyalgia
Exactly how I feel.
Yes 6 years and a lot of time the doctor tell me it was a panic disorder 😡
I'm so sorry 😢
You know what is worst that inside of me I started to feel like I was crazy and all was in my head when I got my diagnosis was a bitter sweet moment
- "But back when you were 14 you didn't go through with treatment x. This might have been avoided if you had."
Children don't have control over their medical care. Doctors told me it was all in my head. I didn't receive a diagnosis that would allow treatment until I was 29 years old. Don't gaslight me
@@CassieWinter I was quoting doctors/parents. I've heard the same thing said to me over and over, before finally, after years of being ignored and ridiculed, when irreversible damage was already done, not being diagnosed for 1 chronical illness, but 3 (4th one pending). Guess who's fault it was I remained undiagnosed for so long? I should have taken more action as a 12 year old. I know a thing or two about gaslighting.
I’m my own worst gaslighter 😢
Big hugs 💖
Married to a personal trainer. My body just fell apart in my 40’s and I want to scream lack of exercise didn’t cause these disorders nor will it fix them!! I’m always tired, I’m not lazy and messy. Between the disorders and med side effects I feel bad literally every day. I don’t take all these meds recreational and that too is not what is making me sick.
My ex husband would say there’s nothing wrong with you, you just like those pills.
Mine are bad mentally and some physical but I look normal. 😢
I'm 21, started seeking out a diagnosis at age 6 or 7. I'm still undiagnosed. I suspect that I have hEDS and POTS but doctors have gaslit me for my entire life so I'm not even sure if or when I'll get a diagnosis...
Also the other thing I wanted to mention is in my prior comments I talk about not being able to do traditional work..... where a lot of my masking came from is in traditional work you have very ridgid scheduling requirements (for good reasons like you gotta make sure your staff is there at the coffee shop, i get it.) that were inaccessible for my disabilities. I had talked about my horrific sleep schedule.... It is very very hard to perform quality work when you phsycically cannot acheive sleep for 48-72 hours despite sleeping pills and meditation and just lying in bed for endless hours.... Would you want your surgeon to be that tired?
Oh yes, the guilt you into admitting you're pregnant gig. Yes, I've experienced that one numerous times.
I don't know if I've heard of that one before but it's so insane that doctors will gaslight you into saying you're pregnant, especially if you're really young, genuinely what the fuck is up with doctors
So did I, I was 11years old. I had chronic endometriosis and didn't get diagnosed till I was in my twenties. 😑
_Below is somewhat of a vent comment_
Hi, I am in a similar camp. But I have trouble using the word disabled for being impaired or differently abled because I have the privilege of perceived intelligence.
I'm not believed by other neurodivergent people either because I cope well, but I am too weird for neurotypicals. I was put into mainstream school despite some resistance from the school administration, thus I was never given accommodations even when I needed them. I feel similar regarding intersex conditions (aka DSD) and hormonal issues (this which I have), in the way there is a difference that I don't feel good about comparing myself to someone who didn't have the blessings I enjoyed for a lot of my life.
I was never given slack as a kid for having body coordination and sensory issues. I was bullied by my family and strangers for every little thing. Suddenly, I am getting diagnosed with so many things when I got a job and my insurance covers going to doctors until they offer real help. I collect issues like pokemon and I really can't handle it without multiple antidepressants because it drives me to want it all over.
Big hugs 💖
After 10 years of chronic pain and illness, I was diagnosed with fibromyalgia, which I don't think covers the full extent of what is going on. At that point, I got some medications that helped a little bit, but not enough to where I could go back to work. I'm at 18 years now, still trying to find the right diagnosis and treatments. It's exhausting.
26 years now triggered from a fall CFS but now more fybromyalgia but CFS includes muscle pain anyway so same thing to me Asperger's add heds
That sounds really tough. I'm not sure the exact difference between CFS and fibro, there seems to be a lot of overlap. Sorry you have been through that for so long.
@@morrisnakes yes seams to me the Asperger's causes mcas most of us have OCD as children which is already the mcas at work my son now has that and add Asperger's and now not at school they don't no what to do with him and awaiting home schooling.ive just lost my mum to severe ms obvously had undiagnosed Asperger's and heds a pure perfectionist miss her so much.have you found anything that helps ime going try a tmj jaw splint next even though I don't have tmj anymore.
@@Truerealism747 I've had the most luck by working really hard on my diet and exercise even when I feel horrible. Easier said than done when I'm in pain, but if I can stay on top of those, it seems to really cut down the amount of days I'm suffering as bad.
Lets not forget that the magority of doctors who will even be willing to diagnose you on paper (as most support services cannot accept a verbal diagnoses which is already hard enough to get even when you are holding hte test results in your hand that clearly indicate.... -deep breath- _ its usually they walk into the room and say something like " Oh yes, you do have POTS. Bye. heres a pamplet eat salt. : there is very little treatment either available or if available its not provided. What I want to know is where is the overseer for medical practice? Where is the enforcement of medical practices? Sure we can sue for financial damages... but where are the criminal charges? Do no harm does not equal passing me off for the last 15 years do various different doctors and not doing a single session of actual treatment.....
19 years
Big oof. Hugs!
I have hashimoto's (most likely, as it's most common) and although diagnosis was quick, the synthetic thyroid meds never ever made me feel any better, not in 15 years! And no other investigation or intervention is available, despite me pushing for it (I'm in the UK)
Treatment resistant things can be so frustrating and demoralizing. Sending hugs. 💖
Have you tryed natural thyroid
The opposite of disabled is not able..... its ENABLED...... If there were ramps and elevators in every single building with accessible washrooms and kitchens and counters etc. People in wheelchairs would be ENabled.... not disabled. If we provided work with truly flexible hours and more emphasis on supporting independent businesses people with seizure disorders would not be fired for being ill. Even with FMLA that is limited- too limited and even then its just a legal job holder youre not getting paid for that time away! Some of us arent even at home all day as some of us live in hospitals!
Reason why alot if us are I'll with Asperger's ADHD add is these things trigger mcas
Do you have an email. I would like to speak with you directly. I have POTS EDS
The best way to talk to me is by scheduling a Zoom call, which you can do so by using this link: app.acuityscheduling.com/schedule.php?owner=16161520&appointmentType=7959991
If for any reason that doesn't work, my email is cwinter@accountabilitymuse.com
@@CassieWinter how much is it
@@therealpelosi793 The discovery call is free! app.acuityscheduling.com/schedule.php?owner=16161520&appointmentType=7959991
Ive noticed youve said that chronic means all day everyday, I hope you are incliding fluctuating symptoms with that since good episodes can happen as well and it still means someone is chronically ill
Yes of course
Turn off the comments. Then no more trolls. ❤❤❤🌹🌹🌹💜💜💜
And unfortunately also no more "engagement" to tell the algorithm to keep pushing my video. As a small channel, every bit of engagement helps, even the bad stuff.