Your Illness is Not Your Fault
ฝัง
- เผยแพร่เมื่อ 2 ส.ค. 2024
- I was surprised how intense this script came out. Apparently this is something that's been stewing in me for a long time. I didn't realize it until I got really annoyed at a friend for saying something that I should have seen as thoughtful and kind. It's funny how these things can sneak up inside of you.
Since I didn't actually check in on my health in this video, and I'm sure people will be curious, I do feel better. My sinus headache is persistent, but the cough is chilling out finally (which is good because I separated some connective tissue from my left lower rib, which is making the coughing hurt pretty bad.)
The colitis is under control after an alarming Dayquil-related symptom spike. My medicine is working very well for me, even if it makes my immune system less good at its job.
Thanks for your support of me, but more for supporting the people in your lives who need it more than I do. I have more support than any one human deserves :-)
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Hope Hank is remembering that his illness isn’t his fault as he navigates cancer and cancer treatments ❤
He’s in complete remission!
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we don't teach empathy, we teach problem-solving. So when we encounter someone with a problem, many people's first instinct is to try to help solve the problem. You're quite right that this often comes across as an implicit judgement on the problem-haver, but I think that's the root of this.
Look at me - here I am problem-solving again.
So I just want to say I empathise with the frustration you feel when that instinct to solve problems overrides the more inclusive response of acknowledging the problem and the impact it's having.
I hope you feel better soon.
(just as a post script, I do find it ironic that I wrote there of the "instinct to solve problems", because the inverse of that is the requirement to apply a rational process to remember to offer an emotional response)
Excellent points!
Oh woah, I just had a self discovery moment reading this comment.
MUNs are wonderful for learning empathy.
Even saying "I hope you feel better soon" can be not a good idea sometimes. If the person knows it's not something that they will ever "feel better" from even that could be rubbing it in.
I agree with you about the problem solving part 100%.
This is like...scarily accurate. I've learned that asking people how I can help them when it is something that can't be solved by me is dumb, even hurtful. But I have been left not knowing what to say when people pour their heart out to me, exposing all the broken bits of themselves, and I just kinda sit there, silent.
Have you tried turning off and turning back on again?
-Advice from the IT department
:O That's TERRIBLE advice for a human!!!!
:O That's TERRIBLE advice!!!
I get the reference and what it's for, but I would never tell that to a human.
No Rain No Rainbow Hey man, it's what Jesus would do.
He should also check if all Cables are connected correctly :DDDD
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THIS APPLIES TO MENTAL ILLNESS TOO
Btw great video, Hank ❤️
Only the ones that can be objectively measured and diagnosed, which rules out most of what people consider "mental illnesses" to begin with.
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Especially with mental illness, because people think mental illness can be cured with behavior changes since it's "all in your head". Yes, I know that exercising and eating well will help my depression. No, you are not the first person to reveal that to me. Also no, that will not magically make me better.
tee-why
When I had a chronic headache lasting 3 years my teachers would say 'oh that's because you spend too much time on the computer' and it used to drive me insane because it would act like that piece of 'advice' totally relieve themselves of having to show any sympathy for me.
A 3 year long headache?? That sounds awful! I really hope you don't have it anymore. Did you ever find out what caused it?
Yeah it's been gone for three years now which is great! I had this thing called Post Viral Headache Syndrome, where your viral headache lasts for a really long time instead of like ~2 weeks and with fatigue as well.. it was awful!
*hugs* I'm glad that nasty headache left! :)
Oh my goodness, how did you diagnose that?? I've had headaches all day every day for the past 2 years and the best the doctors have come up with us stress, which I'm not convinced is the only cause
Well the headache started with a viral headache which was an intense pain and confusion, the doctor said it should go with 2 weeks and medicine. After two weeks he said to wait a month.. and after a month he said there was nothing they could do and that this happens sometimes. So that was that tbh.
But I wouldn't write stress off actually! I had stress induced psoriasis and IBS so it's definitely amazing to see what stress can do to your body. No medicines did ANYTHING to fix it and I had every medicine under the sun haha thank god I live in the UK with the NHS. It seemed that the cause was stress at school because the moment I graduated all three of my illnesses just disappeared. Or maybe it was caused by the stress of the headache and when that went the others too? Either way, stress caused incredibly intense completely debilitating illnesses for me and I was always yelling at the doctors like 'how could it be stress, look how serious it is!' which I regret now. There could be another cause that you'll find eventually but you might have to wait out the storm or school/uni or takes some steps to reduce your stress levels - it could only help!
Man reading this makes me so sad about how sick I was when I was younger!
My roommate has a lot of chronic problems. I tell her she's a goddess stuck in a mortal body, and what she's experiencing is her body failing to properly contain her divine soul. She seems to like that.
Compassionate laughter is where it's at. Your roommate sounds lucky to have you :)
you're welcome
You are a wonderful human being.
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Ah I love that!
Hank, you need to eat vegan, but only on Tuesdays and Thursdays. Eat nothing but potato chips on the 5th Saturday of the month, and fast on the full moon, but only when the full moon is on a date divisible by 7. That will cure your colitis.
Love tha humour
made my day :-)!
I am a 18 year old doctor and I can confirm that this works
XD
Duuude...my heart literally did a single jump as I started reading this, I was about be pissed and my heart-rate was about to go up, but it only lasted a quarter of a second xD
The most annoying part of having Celiac's disease are the people who have actually told me that they do not believe that my disease actually exists. Like, that it's all in my head. It doesn't help that TV has turned "Gluten allergy" or "Gluten-free" into a joke.
I am in the process of being tested for Celiac and i cant help but to agree with you. I also find that people wont believe how serious and long term it is.
"Are you sure you have autism?" - Every Person in My Life when I Told Them I Was Diagnosed with Autism as a Twenty-Eight-Year-Old Adult
In other words, I'm with you, Hank. You are right, and I hope you're having a good day, brother. To everyone who is illness free and able-bodied out there, "Wow, I have no idea what that's like. Would you want to tell me more about your experience so that I can understand?" is a completely acceptable response.
That's a great idea for a response!
What lead up to you not being diagnosed until now? I read an article last year about a man who found out he was autistic because his daughter was diagnosed and his wife realized they had the same behaviors except the man could cope better because well he's lived that way for years and his daughter was around 4.
Yes. That is exactly the thing to say! If a person cares, that work to understand what your friend or family member is going through. It will make the person you care about feel validated, loved, and most importantly, understood.
Off topic, but your username is all sorts of awesome.
That's a great response! Thanks!
I totally understand where you're coming from. I have Chronic Fatigue Syndrome/Myalgic Encephalopathy and when I tell most people they're reaction is always, "I have that too. I'm tired all the time." The disease has nothing to do with getting more sleep, it's an autoimmune disease. I've also had to deal with doctors who think that it is a made up disease, which just this past month it's come out that they may have found the cause in the gut.
I feel that, but mine isn't a physical issue, it's mental. I have clinical anxiety, and I can't tell you how many times people say "oh I feel anxious all the time, I know how you feel." There's a difference between mild anxiety and staying awake for days, being constantly reminded of a little thing you did like 6 years ago that still makes you feel guilty and have that cause you physical discomfort, and things like panic attacks. And I can't tell you how many times I've heard "get over it" or "you're being overdramatic" or "just change your attitude about life". Like Hank, medication is the only thing that has helped.
I sympathize. Having Chronic Insomnia, and people constantly telling me I need to 'get more sleep.' Very helpful advice.
I also have this and others. I'm skeptical about the findings but have cut all grains down to a minimum and feel slightly better. Not enough to get my life back tho
TheBookworm27
Hugs! I feel you!
Not hating but do you mean the chronic fatigue thing is caused by some thing in your gut? Cause that's fascinating but I'm sorry it has had a negative impact on your life...I have the same problem with people saying to me "oh I have ADD to I never pay attention in school and I always watch tv instead of doing my work" like no. You don't have ADD you're lazy and don't care. And I have people all the time tell me it's made up and just an excuse for things and no it's not. It sucks! I forget things I lose things constantly I turn around suddenly I've trashed my room & I have no idea how it got that way. It's frustrating but you just have to try and stand up for yourself as best you can without stressing too much about it.
Every time someone makes me feel bad about being chroncially ill, I come back to this video and feel better again. For me, this is the most important vlogbrothers video. Thank you!
Fresh Arche me too. Prob my 10th time
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Just saved this video for this exact reason.
Probably my 5th or 6th time watching. It helps in ways medicine doesn't. Thanks, Hank.
"oh u have depression? why don't you just start to think positive?"
ugh
@drunk witch _
My therapist keeps saying that I should fo walk my dog. I’ve told her several times that I don’t have a dog. And she keeps bringing up dog walking😂
Darby T. 😆
The Earth in my experience animals are very therapeutic to be around so maybe that’s what your therapist is saying idk
I think this is a symptom of the overemphasis on Western culture of self-determination, which is a good idea in the abstract but can be very cruel in some situations. Western society places so much emphasis on individual liberties and choices, but the flip side of that freedom is that you have to take responsibility for everything that happens to you, but as Hank says, that mentality doesn't always match reality. For example, the phrase "you can only be a victim if you let them make you one" is I think a really cruel thing to say to someone who has been a victim of some kind of crime, especially sexual crime, which is the context I hear it said most often. It's placing the responsibility on the victim to be strong enough to not be victimized, when they are already having to bear the burden of a traumatic experience that they certainly did not deserve. I know it's probably meant to sound encouraging and empowering, like the people who tell Hank that his cure is in his hands, but as Hank describes, putting the onus on the person who is suffering is just a very hurtful thing to do, even if it is meant with good intentions.
I (with my mother and father) was in a really bad car accident (other person's fault) and have facial scarring. My father loves to tell my now incredibly anxious mother to stop being a victim and start being a survivor. He then holds me up as an example because I can't be bothered to care about my scars. I think we as a society need to recognize the role that chance plays in our success and failure. Whether that chance be genetic or anything else outside our reasonable control. This is how I got through my circumstances.
This is a really important point. I drew connections with our solution-oriented society and the legal system, the way we instruct our children, and even capitalism; I did not draw them specifically to Western cultural norms and traditions. But you're right: it's yet another really cruel implementation of the bootstraps mythos.
Wauw, I really like how you've linked it to Western idea(l)s of self-determination. Makes me think of this Ted talk by Alan de Botton: A Kinder, Gentler Philosophy of Succes. Basically, he says that the idea that, these days, your background shouldn't determine your success in life anymore (like, it used to be if you came from a family of "blue collar" workers, you'd never be expected or even allowed to go beyond that) also has a flipside: it means that if you don't achieve a high level of success (whatever that means btw), you have no one to blame for that but yourself.
Man, do we make things hard on ourselves and each other sometimes.
This is so true! I remember working in an elementary school and seeing a poster that said something to the effect of "No one can make you feel small unless you let them." It really came off to me as saying "You're bullied because you let yourself be bullied--it's your fault you're being victimized." It didn't feel self-empowering, but rather seemed to deny that you can be victimized without your consent or participation.
I totally agree. I like, especially, the reply that talks about Alain de Boton. We all end up responsible for our circumstances and alone with our suffering. The thing is, while we can't change our circumstances, we can change how we respond to them. I think that's what the poster is trying to teach the children. When children are bullied, they need support and care of adults. Period. When adults are bullied, while they need community support too, without a strong inner sense of themselves as worthy, lovable, and entitled to respect regardless of their circumstances, they will be caught in the story of victimhood. I agree that saying you can only be a victim if you let them make you one is cruel because it compounds the hurt. The goal is to help the sufferer be free of the victim story not by taking it away from them, but by nurturing a separate story of a worthy, lovable, entitled self that eventually is stronger than the victim story. The first step is to notice who is telling the story -- you or those who want to hurt you? Screw them. They don't care about you. Find a voice that does - maybe your dog or your stuffed animal or Miles Davis - and nurture that love into a story of love and worth and entitlement.
DANG. This is so real.
This is especially true for mental illness. Everyone has a solution, you just need to get out of your house and do something, you need to just try not to think about the things that cause you anxiety, and the especially common "your attitude is your choice, you get to chose how you feel." All of them boil down to "If you wanted to, you could just will yourself to get over this." That somehow I'm doing something wrong that causes depression and anxiety. And the worst part of it is that it's those voices that kept me from realizing I had a problem for years and went so long without a diagnosis. And even after being diagnosed, it was those voices that I had internalized that kept me asking myself "is this really anxiety or am I just being a wimp?" and "is this really depression or am I just using that as an excuse to not get out of bed?" And to be honest, if you're genuinely asking yourself if you're just using your disease as an excuse, then you're probably not. My illness is not my fault. I can't just choose not to feel it.
Yeah, even people who have been through mental illness get that wrong. It's easy to forget, feeling of control over one's mind is more a symptom of "feeling better" than it is a cause. A million wordless, nameless little pieces of brain have to be arranged just so, for a just hint of that feeling.
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this comment is so frickin beautiful. thank you
I love it when people tell me to "worry less".
It doesn't work that way. It's called an anxiety *disorder* because it's more or less out of your control.
i so agree with you on the last sentence becuase i also used to ask myself this too. until now i thought about what u said. honestly, if you think to ur self "am i using depression as an excuse to be lazy" then u most certainly struggle with mental health for real, because the fact that u urself know that ure procastinating or being lazy shows that u don't like it this way and u wish u wouldn't find an excuse, like depression. but its not an excuse, its real. thats why youre still lazy even tho deep down you dont want to be lazy. DEEP DOWN
I rarely comment, but I gotta thank you for this. I have Asperger's, which people occasionally tell me I should cure with eating gluten free or some fad diet, or with MMS (bleach, effectively), or they tell me to suck it up. I also have an attention disorder, which people tell me to just work on and it'll get better.
But the worst is my depression and anxiety. I've suffered from suicidal thoughts since I was 7 years old, and they'll never quite leave me alone. 'But if you'd just try to see the bright side of things' 'Just work out more' 'Eat right and you'll feel better'... oh the advice I get. It makes me feel like the way my brain works is somehow my fault, and even though in many ways I do feel better for some period of time, I also have to accept that I'm never going to be entirely rid of my depressions or anxiety. But people see them as temporary illnesses, and so I must be doing something wrong.
Rachel B It is extremely difficult to understand the issues we have, if you have not had them (or something similar) yourself. But the least they could do is accept that we have no reason to lie about it.
I tell people, when I feel that they see me as lazy or whatnot, that I have days when I don't have the energy to get out of bed, to eat, to brush my teeth.. there's nothing I want more than to never have those days. I wish I could have a normal job, that I could cope with a 'normal' day to day life, as I see others doing. It seems amazing to me. I wish I didn't have those awful days. I wish I wasn't made to feel ashamed of being ill (not including ASD in that term) or different (ASD belongs there :P ). I want to not have that shame from others. I want to prove that I'm worth something.
I don't want to sit around for hours having an anxiety attack. It's not fun. It's exhausting.
When people hear that it's not just 'I can't go to work' but also 'I can't brush my teeth or eat', they tend to realize just a little bit that my depressions and anxiety isn't a gimmick to get out of hard work - it's an actual illness which fucks with my ability to live.
It seems like the myth that people with depression and anxiety will just eventually get over it is especially harmful to those with mental illness. (that's not to say that people can't mostly or entirely recover but that is not every case) There are so many different causes of and factors that go into mental illness. Medicine and therapy and lifestyle changes are all important and can do amazing things for people. But to say that depression and anxiety are curable completely ignores those of us who have been struggling with it for years and will probably continue to struggle with it for the rest of our years.
Something else that makes it difficult for people without mental illness to understand people with mental illness is their skewed baseline of "okay" or "good". For me okay is not having the urge to hurt myself or feeling like my brain is racing but going nowhere. When I'm "okay" and even when I'm "good" I'd still rather be dead. I'm going to try my best at this whole life thing but don't expect me to be happy about it. Your awful is my okay, it's all relative.
My sister has aspergers (or "had" since it's no longer an official diagnosis) and it's ridiculous how many people think a gluten free diet is some magical cure.
jobriq5 This is a pet peeve of mine, please don't take it as me being angry or something.. I'd just like to clarify if "had" is understood correctly, because I've seen the change in diagnostic labels be misunderstood quite a lot.
She still has asperger's even though they changed the name. If she were re-evaluated, she might be said to have ASD-1 instead, but that doesn't change anything. :)
The DSM also (previously) changed fx psychopathy into antisocial personality disorder... but it's still basically the same thing.
I've had people tell me that I'm not aspie anymore because the diagnosis no longer exists, like somehow I have changed with the labels.. but the DSM is only one diagnostic manual, and my country uses a different one, where asperger's is actually still a diagnosis, but more importantly, it doesn't change the people who got the diagnosis. We still need the help we needed when we got the diagnosis. :)
Gluten free does actually help some things... like my fibromyalgia, though it's still far from a cure. People need to stop tooting it as a cure all. And let doctors tell the person with an illness that they need to go gluten free, IF it applies to their illness.
Also, I think people have a problem understanding the difference between clinical depression and anxiety and how people use the terms colloquially. I have experienced both. When it's not clinical, their cures often actually work. When they are, it takes persistence and luck to find pills and/or counseling that make it better rather than worse and it's still not a cure.
Okay, here's an idea: if the subject of your illness comes up, anybody who says: "But have you tried ...?" owes you a dollar, with additional fees depending on what the suggestion is:
Diet ideas: $10
Regimens that require you to "push yourself" (fasting, strenuous exercise, disrupting your sleep schedule, etc.): $15
Herbal Remedy from Ancient Culture X: $25
Positive Thinking: $500
I am so on board with this! I would have $2000 off my mother before half an hour was up!
My god, you are an actual genius. If I hear another "Well, have you tried going to bed earlier?" for my anxiety-induced insomnia, I might kill someone.
. . . I don't think those people have any clue how insomnia (or anxiety) actually works.
Genius!
'try breathing deeply and clenching and releasing your muscles when you feel anxious or upset': I now own your car.
This goes for parents of children with special needs. People says some senseless things sometimes.
A person told me to put crushed zinc rocks to "cure my autism". [ ._.]
+Galactic Grandma Sad thing is there are so many fake autism cures that can cause so much serious damage and lots of desperate parents actually make their kids take them.
Wasn't he just describing christianity for the first 1/2 of this video?
Didn't people used to try and "cure" homosexuality in similar ways?
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This made me think of a part in Patrick Ness' book 'The Rest of Us Just Live Here' :
“Feelings don't try to kill you, even the painful ones. Anxiety is a feeling grown too large. A feeling grown aggressive and dangerous. You're responsible for it's consequences, you're responsible for treating it. But Michael, you're not responsible for causing it. You're not morally at fault for it. No more than you would be for a tumour.”
Like you say, we need to realise chronic illness is NOT our fault. We didn't do anything to deserve it and there isn't always an easy way out. We need to realise it and people around us need to realise it so that hey don't say those kind of things that can hurt or make you feel guilty.
Have you tried growing a mustache?
mmm, i heard a goatee works best
Maybe a beard
Beard doesn't cut it.
+Syrkyth a razor might
aaroNiGHTS 🤣
I had a couple of vegans tell me that I wouldn't have gotten breast cancer I was vegan...fuck that.
Yeah some of those Vegans are real assholes. Not all of them but the ones who treat it like a cult.
Yeah, some self-procalimed vegans are not really better than who they're attacking. However, there is evidence that diet can have a big influence on whether one develops cancer or not.
pennymac16 Like I said, fuck that...and fuck them.
pennymac16
And just as much evidence that normal background radiation can cause cancer.
Kudos, for not dope slapping those persons into orbit.
This is a perspective issue. I think this response comes from people who don't have a chronic illness trying to empathize and assuming that the illness CAN get better, even if it cannot. People who don't have a chronic health problem are used to a pattern of illness then wellness, by waiting it out, or resting, or homeopathic treatment, etc. So they can only see your illness through the lens of their own experience, which is of course, totally unhelpful. They mean well, but they are ignorant of how little help they actually are. This has changed my perspective on chronic illness and how I should respond to it. Thank you for reminding me to be supportive.
Great point
fo' REAL. real bullshit, homeopathy, right? Totally.
As someone who has lived her life since 8 years old with a chronic illness, I've *never* considered this POV. Like, I think you just blew my mind a little. Thank you for sharing.
+NinjaNerd007 all we can do is try to understand!
+Paulo Andre Azevedo Quirino I know that homeopathy and other alternative medicines only preform as well as placebo. but often for people with illnesses which cannot be "cured" and the pain can only be treated, having the placebo take away pain is just as good as prescription medication (plus you don't get the terrible side effects). There are defiantly downsides to alternative treatments (cost, lack of access), but I know many people with chronic illnesses who rely on them when opioids or other medications had debilitating side effects.
I'll link an interesting podcast which talks about how the placebo works, even if you know the treatment is ineffective.
www.wnyc.org/story/real-doctors-fake-medicine-placebos/
Note: you should go to a real doctor if you have any life threatening health problems, this only really applies to things like chronic pain
Hank, I watched this video when it came out, multiple times. I showed my Mum. I have PTSD and Fibromyalgia and Joint Hypermobility Syndrome and some other things (IBS / GERD / other acronyms) and it spoke to me really profoundly. And then I kind of forgot about it.
On February 14th of this year, my rarest disease (an autosomal dominant genetic cancer disease) that I never think about - the SDHD Gene Fault or (Hereditary PGL PCC) - revealed two rare neuroendocrine tumours to me, paragangliomas, in my neck. I've had one before. A carotid body tumour that had a wicked, fascinating surgery attached to it at the age of 18 that I was *very lucky to survive.*
I actually now have *three* paragangliomas. One in the jugular bulb on the left. Another carotid body paraganglioma on the right, and a 'glomus vagale' (vagus nerve tumour) on the right. The surgery to remove them involves an ENT surgeon, a Neurosurgeon, a Vascular surgeon, and I also consult with a Radiation Oncologist (for the AMAZING sounding Cyberknife Radiosurgery) and an Endocrinologist. I call this troop my 'boy band.' (Saving my life one smooth tune at a time, wait, that doesn't work). I've had a lot of MRI / CT scans this year, and one Gallium Octreotate PET, where talking to the physicist on staff was one of the most exciting things I've done - I swear, those people are incredible.
Anyway, on the rollicking adventure of having 'slow growing but definitely wants to kill you and can metastasise at any point and also *totally incurable* because it's a genetic fault at the ATP level tumours' - I've been sharing my journey on Facebook, and have had an incredible amount of people give me terrible advice. From going keto, to trying 'that one kind of Reiki', to eating more red bell peppers (or maybe only red bell peppers?), to coconut oil, the 'no tyramine diet' and a few other things. I've gotten very *angry.* Extremely angry. Of course I can see it's kind of a 'well-intentioned blame game' but hey I have cancer now and I have mostly dealt with my rage by venting to trusted friends and family.
The fact is, the surgery will very likely kill me or make me wish I was dead, and it won't ever stop more of these tumours growing. So I'm going to have to live with these tumours for the rest of my life. I've named them Thelma & Louise (the ones found on Valentine's Day) and Caramello (based after the Australian treat the 'Caramello Koala' because a surgeon when I was 18 told me that I should think of these tumours like koalas clinging to trees (i.e. arteries and nerves)). I live with these vampire koalas in my body, and I've had to adjust from thinking 'get the cancer OUT OF ME' to 'oh...I have to live with this forever now, okay.' I could actually live for a really long time, these tumours take a long time to grow, and I have the privilege of the best care in the state, thanks to universal healthcare.
The past week I've just been retroactively watching Vlogbrothers videos that I've missed, but I watched this one again because I remembered what it meant to me last year.
The point is, *thank you.* I'm about to share this to my Facebook page (possibly for the second or third time). Thank you for pinning down such a universal experience for so many people with chronic illness, even when it's a chronic cancer disease. Thank you for taking the time to talk to us about your chronic illness, more than once even, and making it easier for people like myself to consider talking about it. I'm actually doing pretty fine (as fine as you can be) about this cancer disease. It's rare and fascinating and for the most part people really do listen to what I have to say about it, because it is so rare.
But now I get to also always remember that when someone says 'you should be eating a ketogenic diet' I can think freely: 'this isn't about me, this is about them. And not doing their fad, is just another form of caring for myself. My disease is not my fault.'
Thanks again
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Pia - My heart goes out to you. You definitely have a full plate of problems no one should have.
To a degree, I understand; I also have a fine collection of autoimmune/chronic diseases. We share - at least - IBS & Fibro. My latest acquisition is psoriatic arthritis. THAT is a festering, painful mess I could have lived without.
I rewatch Hank's chronic illness videos whenever I'm ready to pull my hair out - or punch someone in the nose. He's so open and candid about all the realities attached to a chronic disease - so much more than I am able to be.
Your super rare, extra awful, cancer crap sucks. It all sucks, but that really sucks. I'm sorry you are having to go through it.
It's nice to be able to tune into Hank & get a dose of reality, compassion & righteous anger. He'd probably hate it, but some days he can be something of a rock. There he is, flailing around, singing the song of my people. (Thanks Hank)
I hope for you the best possible outcomes, Pia. Maryann
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As someone who has struggled with a choice illness for over a third of my life, this video really struck a cord with me. It's impossible to explain this to someone and you put it in the perfect words. I'm literally crying right now because someone out there understands this feeling. Thank you for this video Hank. Truly, thank you.
I have Crohn's, and I hate it when people (online or in real life) say "try gluten free for a month" "did you eat too much junk food as a kid"(this one is quite common since I was diagnosed at 9 years old), "you shouldn't have kids, you will pass on bad genes" "aren't you going to get cancer" "can you eat that?" "That food has sugar in it, can you eat that?"
These are just the most common things I am told when I say I have Crohn's, and it is so annoying!!!! Like since when did eating sugar or gluten cause my body to attack itself????
I think people have that mindset since lately so many people are actually giving themselves/giving their kids those 2 diabetes from bad diets when in reality that's most likely the only example of self inflicted disease. And obviously some people are going to be predisposed to it but there are definitely people who they or their parents did it to them....but you can have the last laugh with the gluten free people unless you have wheat allergy, Celiac, etc where gluten doesn't agree with you going gluten free does nothing 😂 and because gluten free breads and such are packed with sugar and flavorings to make it taste good it can over time result in weight gain.
Unless you have coeliac disease, eating gluten will not cause your body to attack itself.
I have Crohn's disease too and this bugs me soooo much too ugh. One time this lady was talking to me about how I was feeling and then began to tell me how a coworker of hers died from crohns... I was like oh thanks that's just what I needed to hear.
I have Crohn's too. For over 20 years now and 4 surgeries. I still get people trying to tell me cures. Sadly, I still feel fault for my illness. Not always. But, that thought is always in my head.
I find that with Crohn's (and other autoimmune diseases), a lot of people truly just don't know what the disease IS. They don't understand that it's an autoimmune issue, nor do they understand what that means in regards to treatments and symptoms. So like they'll know that Crohn's has to do with angry GI tracts but since they don't understand that a confused immune system is what's causing it, they assume it must be primarily a dietary thing.
I feel bad about what you have to go through. I, may not have an illness that many people care about (and some people don't even think it is true) I have Depression and Anxiety. And a lot of people (even my own MOTHER) have said that I have major depression because of the music I listen to, the people I hang out with (which is really weird to me because I only have one other friend who has depression too) and everyone is blaming me for this mental illness that I can't control. I know, depression and anxiety is not as serious as yours (I'm not good at spelling sorry Hank) but I just want you to know that I know how you feel. Also, I hope you get better soon.
I know the feeling. With this topic, I wouldn't give my normal shpeal about this, so all I will say is best wishes. Its tough to go through something like that, especially if people don't believe it, and you deserve better. Best wishes for your health and wellness.
An illness is an illness. What you have is every bit as serious as Hank's is to him. Because it's happening to you. It's terrible that people in your life blame you for such a thing. Just hang in there, and pull through. Life will surprise you with it's little rewards if you just be the person you want to be, as much as you're capable of it. Sometimes even your family members can be the toxic people in your life that you need to avoid.
I have depression and anxiety as well. I have no trauma that brought it on. I have a good life with very little stress. It makes no difference. Just as a healthy person can get diabetes, a person with a perfectly ordinary lie can have mental illness. That's what so many people don't get. It's an illness. Not a state of mind. I don't feel 'sad' and I don't 'worry too much'. I deal with a brain that over-reacts to normal stressors, has unstable mood swings, and manifests emotions so painful it becomes a physical pain. This is going on inside my brain and I have no control over it. I can only do my best to deal with it through therapy, some coping methods and sometime yes, even medication.
You're not alone.
+Monique Pihl That's all I thought when I saw this notification popped up. I enjoyed hearing how he relates and how I can relate to him even though mine is depression and his is a physical illness.
Have you self diagnosed?
As someone with Crohn's... yes, yes, yes. Hearing this from you makes me glad that someone is saying this, and knowing someone I respect is coping with something similar is encouraging and helps me feel less alone in it.
I also have Crohn's and agree completely. At the end of the day, my illness comes down to winning the biologic gamble (trying a biologic and hoping it doesn't fail). I lost once and I won once, and I didn't truly know the outcomes of either until around 6 months after the fact. Food and stress are definitely factors, but it sucks that you just have to try a medicine and pray it doesn't fail. By the way, the consequences of failing a biologic for many including me is months of debilitating pain, prednisone (which is an effective but unpleasant drug that's unsafe long-term), and often surgery.
Yes. I have several chronic illnesses, one of which (PCOS) causes weight gain, and people are always blaming all of my illnesses on my weight rather than acknowledging it as a symptom.
"Just exercise!" Well, I have arthritis.
"Just stop eating so much." Well, my chronic depression makes it so that I have no appetite, so if anything I don't eat *enough.*
"Just sleep more! "Well, there's this anxiety issue...
How about everyone just stay out of peoples' business? If you want to say anything, ask if there's anything you can do to help.
That's one hell of a chronic cocktail. I feel for ya, friend. :(
Oh man, I am so with you on that, aggrocrow.
I exercise, despite having really bad chronic pain. Stupidly stubborn on my part.
I eat very little.
I can't sleep much, because chronic pain.
I have PCOS.
I have PTSD, too.
I also have severe autoimmune issues.
Go me, right?
i agree, god bless
aggrocrow Hey, a fellow PCOS sufferer here!! Also do suffer from numerous mental health conditions and chronic pain and swelling too (being investigated, thinking either osteoarthritis or fibromyalgia) and low iron thanks to my heavy periods caused by PCOS. Also have been having conversations with doctors about the possibility of me having endometriosis recently due to various symptoms. I constantly get the weight speeches too. I am obese and people constantly say my problems are due to my weight. As soon as I hit puberty, my weight started to skyrocket. My diet didn't change at all. It was PCOS that caused it because I have always had symptoms ever since I started developing and have been diagnosed for 2 years now. Everyone seems to think they know it all and even though I know they mean well, my weight is a real struggle and them pointing it out and blaming it and all my conditions on me really doesn't help.
replace "illness" with "depression" and it's the same exact feels
I suffer from epilepsy and depression since 6 years. On Monday i will start working for the first time in 2 and a half years. Good luck on your journey dudette!
+Özkan Tok that's awesome! Good luck at your job!
Depression is an illness
I was thinking the same thing, and as people said above it is an illness. yet as I'm sitting here reading comments why do I consider it not to be? it has the same implications as most... people tell you what to do, and some don't believe you even are struggling.... I guess it pales in comparison (in my weird mind) to all other forms of disease mental or physical which it shouldn't because it obviously doesn't pale in comparison
+whitesalot I think it's because it's difficult for people to understand when they haven't experienced it themselves. Everyone's had a cold or scraped a knee, etc. so they know what it's like. Not everyone actually knows how difficult telling your mind to stop thinking these things (whether it's depression or anxiety or what have you) when you know it's illogical.
Some thing with mental illnesses. Whole life people tell me "just do stuff that makes you happy" oh ok thank you very much I am not cured thank you God bless you. Love you John.
my personal favorite with regard to mental illness (anxiety in particular) is "just don't be stressed out" like wow, I hadn't thought of that. Let me just do that then.
My favorite simile is, "Telling a depressed person to snap out of it is like telling a deaf person to hear better."
+untappedinkwell as a person with anxiety yeah umm stress is Unavoidable... It will happen, the best solution is: cope, just try, there will be times when a default response (my case: rage, crying, irritation, etc) slips through but you can't regret trying
I was about to say the same thing. I struggle with mental illness as well. Thank you for saying so. Hank speaks a lot of truth here, and many can relate, even if it's not a physical illness. I know I can.
Have you tried praying to God for a sprig of eldritch wood infused with fairy dust which has come from the river Styx? I hear that cures anxiety.
I'm glad you made this. Im a severe epileptic and my medicine is the only thing that helps. Sometimes I have mood swings as a side effect and everyone tells me why its bad and how to treat my problem. It sucks to hear how bad my medicine is and why I shouldnt take it
Do you mean to say that the average person is not an expert neurologist? It amazes me that people can think that they know what is better for you even with such a complex illness.
Every single medicine on the market has side effects. It depends on the individual whether those side effects are worth enduring for the benefits of the medicine. Only patient and doctor can make that decision. When medicines don't work "perfectly" people will then yell about "big pharma". Continue to do what you and your doctor think is right for you and best of luck to you!
Have you had the opportunity to try CBD oil? (non-psychoactive)
Take what makes you feel better!!! Don't listen to pricks who don't know any better. ❤️ My cousin has epilepsy and I've seen how much she's struggled. She now has severe problems with her shoulder because she dislocated it so many times having fits. She went through doctor after doctor trying to tell them how it was connected to her menstrual cycle and no one would listen until finally, one did and she had the rod put in and was fit free for years. Recently, she had a baby and as soon as the baby had been born, she had a fit but now she's got the rod back in so she's doing well again :) I look up to her so much, especially since I have chronic illnesses myself (nothing like epilepsy though thankfully).
I get this ALL THE TIME with my asthma/DRRI. "Just work out." "My wife has asthma, and she's just fine." blah blah blah PISS OFF!!!
Yes! My asthma is complicated by sarcoidosis, and people simply refuse to understand that I CAN'T come to their cookout, because the smoke would put me in the hospital for a week. And they won't accept that dropping wheat or milk or gluten or whatever will not make it better, taking up running won't make it better, seeing a therapist won't help my breathing. Keeping the inhaler on hand and being religious with the immunosuppressants is helping, but it is still a fight. I just wish people would LISTEN...
Asthma and allergies to literally everything has always been a dreadful combination in my life. People act like bringing their pets around shouldn't be a big deal, but an hour around a cat and my lips are blue.
Every woman I've ever dated has been a cat person, and every one of them has thrust onto me a crushing burden of guilt because I won't sacrifice my ability to breathe so they can have one (or five).
I know cats make you happy, but oxygen makes me NOT DEAD.
I find it really difficult to respond to someone telling me they're ill, whether it is physically or mentally (which happened in fact quite a few times this year). Saying "I'm sorry" just doesn't feel good to me, because I think especially the people telling me about their mental disease don't want to be pitied by me. So it is often very difficult to not fall into the "I know what could make you feel better"-thing. I usually say something like "Oh, that sucks" and then continue either with pointing out the kind of "positive" sides of it (if there are any) or change topics, but I don't think that's the right way to do it either, because it comes across like I don't care or I don't take the illness serious enough, when in fact, I simply don't know a better way to react.
I get what you mean. It's oddly really difficult to show sympathy "the right way." I think it's really dependent on who you're talking to. Usually I go with the "Oh man that sucks," kind of response and the people I know seem to like it. I know personally when I talk to people about something shitty in my life the whole silver-linings attempt usually annoys me. But I'm sure it actually does help other people. In other words: communication is hard!
I recommend the "that sucks" approach, followed by offering to help any way you can.
I can totally understand where you're coming from. It can be hard for the person hearing the news. This is just how I feel, but just having someone to listen to me complain and tell me that yea, what I'm going through sucks really helps. As someone with a mental illness, we're not looking to be fixed, we're just looking to vent. So I'd say you just being there for someone and listening is great. If you still feel unsure of how to respond maybe you could ask what you could do. That way you know you are being helpful. Just an idea.
I'd go with a version of "that sucks", and then let them know that you're there if they need anything. That way, you're helping as best as you can without making them frustrated or upset.
That's a familiar feeling, from either side. There's something inherently difficult about listening to a problem you can't solve, especially if you can see someone suffering from it.
I can't make it easier, but personally I'm thankful for that person who listens every once in a while.
Don't get me wrong, it'd be bad if I were complaining continuously, but every once in a while it's nice to say what's on your mind, and have someone listen.
My mom also has ulcerative colitis.. It breaks my heart when I see her struggling, so I totally understand your frustration. Sending you lots of good vibes, Hank!
I had a few vegans tell me that I could be off my blood thinning meds if I went vegan.....which is literally something that might kill me via blood clots and strokes (lack of blood thinners + vitamine D = lot of blood clots formed around my mechanicaly heart valve) hahaha....so that's nice.
thank you for this. I think a lot of people have the best of intentions but really needs to lay off and leave it to the professionals (aka my many cardiologists and cardiovascular surgeons)
Rip
i actually hate how close to home this video hit me. i have asthma that's caused by aerobic activity, and one day during gym class i was having a really bad attack to the point that i started crying. i went into the changing room because i was embarrassed and after a while my gym teacher got worried and asked me to come sit on one of the benches in the gymnasium so that she could at least see me and make sure i was okay. i was still embarrassed, but i reluctantly sat on the bench. while i was still in the process of recovering, the assistant gym teacher came up to me and said "i used to have really bad asthma, but i just kept running and over time it got better." this was not only incredibly insulting to me, but it made me almost start crying again. how can you say something like that to someone who's in a lot of pain? asthma is an illness that some people grow out of, and from my experience, my asthma is not something that will be going away any time soon.
Yes. Goes with depression too.
"You shouldn't take medication"
"You should try yoga/ meditation/ exercise/ being happy/ not complaining/ seeing the good side of life/..."
"How old are you?"
"Don't be depressed"
Etc.
Yup I totally feel this. At one stage I was taking nine different multi-vitamins a night because everyone just thought it was my gosh darn teenage hormones. It was only once I stopped going to school because I was in a state of constant panic that someone thought I should go to a doctor.... Anyway, I hope your meds help you out, even just a little. And I hope you have some cool supportive people in your life to help you out if you need it!
+katie Head I asked for help but all the place had a waitlist of at least a half year.
So I listened to my fucking parents forcing myself to go to hellschool even when I was literally falling where I was standing.
and than one morning I stoped responding to everything. I was awake but I could not talk or get up. Scared everyone next day there was a crisis team.
Tessiegril Oh joy, that sounds like fun. I hope you're getting help now, and that you're starting to feel better. No one should how to go though shit like that.
I remember going to a drama camp thing and there was this 'cabaret' where, if you wanted, you could go up on stage and do a thing. I didn't, cause of my anxiety and when I told someone I wasn't cause I'm too anxious, she said, "Don't be". Thank you very much I am now cured.
I got "You shouldn't take medication" so many times as an impressionable teen that I actually stopped taking my meds, and unsurprisingly, ended up in the hospital.
I totally relate to the mild frustration that comes with everyone you meet deciding to be your doctor. I'm a singer, and whenever I lose my voice/am on vocal rest, literally everyone feels the need to tell me to drink tea or honey or to steam or to be sure not to talk, and for some reason they think this is information that I would never have received, despite my voice being a part of my profession. You're right, they mean well, but after a while it becomes very condescending.
Thank you Hank. It's the first time I've been told my illnesses are not my fault and just wow... I feel like a weight has lifted. Thank you so much, for so eloquently expressing those frustrations we share
I can really relate to this. I've had Crohn's Disease since I was 4 years old and I'm currently working through my first serious flare-up in 9 years. A close friend just tried to convince me that weed was a good solution and I had to tell him flat out how ridiculous that was. You're right that the solution is to take our meds and live the best we can. Thank you for sharing your story.
My TH-cam Channel +
you know what's needed, education, straight from school, on disability and illness.
True.
That's actually what I am working on for my high school!
I don't know how much good that would do since even doctors treat mentally disabled people as if they're sub-human.
What doctors are you talking about? I get that there are loads of places where mentally ill people are treated inhumanly, but I'm pretty sure the majority of doctors in the western world are entirely supportive of people with mental illness and try to help them in any way they can.
Jacob Duncan You've obviously never been in a psych crisis unit in Florida.
A LOT of these points apply heavily to mental illness as well. People like myself get the same lines of "Just stop being sad, depression is just a phase!" and other things that are genuinely trying to be helpful, but ultimately miss the point. I know they're saying things out of wanting to help and for me to get better, but I can't help but blame myself on days where I'm already feeling low. These are great points to remember, along with that illnesses, chronic or not, do NOT define who we are as people. Thank you for making this video.
Mental illnesses are chronic illnesses too, in most cases, so yeah, it would relate to what he was talking about:)
This always makes me better when I have flare-ups and I'm bombarded with 'advice' from people about what they think I should be doing to get well and then consequently over analyse my life wondering what, if anything, I did to cause/ exacerbate my IBD. Thanks for helping to ground me during the times I feel helpless, Hank. 💖
I was just diagnosed with a serious autoimmune called vasculitis. I'm afraid to tell people because of what you mentioned. Thank you for the shout out.
I'm vegan and chronically Ill and disabled, but when I get "you should try acupuncture, crystal therapy, this, that." and I feel like they are basically saying "its your fault."
the one that upsets me the MOST is "oh my friend had that but he isn't in a wheelchair, maybe if you tried walking just a little further every day you'd get better." my spinal injury consultant doesn't seem to agree, nor does my spine when I'm walking. it's frustrating and upsetting.
I don't understand how this in any way connects to the fact that you're vegan
+john glenn because he said about people suggesting going vegan, fasting, going paleo etc. So going vegan isn't a magical cure all thst most vegans try to advertise it to be!
I'm not one of those "hi I'm vegan and my name is gothmummi" people lol. I live in a carnivore dominate household, so I'm not a scary "you deserve to be tortured cos you ate a burger!" Vegan. I'm a " I love all living things including humans" vegan. ✌
Oh sorry
Thank you for making this video, Hank.
The problems you're having with being chronically ill are pretty close to the problems I have being fat (which in itself is a form of chronic illness).
People always seem to have the solution; go vegan, do keto, eat all fruit, fast, try this supplement, etc.
Never do they stop to consider that these are things I have tried my whole life. Whats worse is that I do understand the basic concept of what I need to do: more calories out, less calories in. But due to a whole host of health issues and mental issues this can be very difficult for me. We currently have a whole team of doctors trying to get me healthy and fit enough for surgery and they know exactly what we need to do; its just proving difficult for everyone involved.
I also struggle with the "its your fault" problem. With your illness, its certainly not your fault. But In a lot of ways obesity is my fault even regarding all of the other underlying issues. Not only do I know that its my fault but so does everyone else and people treat me accordingly.
I'm not complaining though, just wanted to say that I can relate. Stay strong and I hope you feel better soon :)
I appreciate that comment, simply because it's one of those "random" comments, that even through text, feels very honest to me, and I like to believe I have a sense for that. I really wish all the best, thanks for sharing
Ugh I feel this so much!
happy for u
Oof. That sounds really hard and I'm sorry you have to go through that. I'm not overweight myself, but I have chronic illness and I also struggle with shame over making choices that I know compound the problem. One thing I try to remind myself is that yes, I can make choices that can alleviate symptoms but I do not control the illness. Someone else can make the same choices you or I make and not suffer in the way that you or I do. I hope these words resonate with you.
Thanks Hank! From now on I'm just going to send this video when people start talking about an amazing thing that is totally gonna cure my ulcerative colitis. It explains my feelings well, and then I won't have to defend myself every single time people bring it up.
It is now 8 months after I've been diagnosed with a chronic illness, multiple sclerosis in my case. CANNOT stress enough how absolutely and completely amazing this video has been for me today (and probably will be for me on many other days
You and I have the same autoimmune disease, and this was great to watch. You were able to articulate many of the feelings I have not been able to put into words.
So thank you.
Really like watching this video with the perspective of mental illness! such important points you made
This video came up at the correct point in time for me. Thank you. All the best to you, Hank.
Try eating an entire large popcorn bucket full of unpopped popcorn kernels. This won't help your Ulcerative Colitis, but anytime you get dubious advice you can think "Well, at least it's not that guy on the internet who told me to eat a ton of popcorn kernels."
I totally get it. Ive had migraines since I was 14 and I am now 33. I have tried almost everything. Vegan, no carbs, high protein, only organic, no dairy, lots of water, working out etc etc. Nothing works. For years ive been seen by specialists and they have come up with nothing.
Ive excepted that this is something I will just have to deal with and make the best of. But there will also be some jerk who will say its because I dont eat all organic or that maybe I should try these diet pills they happen to be selling. Because they somehow know better that the specialist. Because they did internet searches and its because I dont drink enough tea and honey.
I'm a nice person but it takes everything I have not to snap at these people. I've heard the same crap over and over for years.
You know what I want to hear.....I HOPE YOU FEEL BETTER SOON. Thats all you have to say.
:( you have my sympathy.
migraines suck, and I'm very lucky that I can sort of control mine by being very very careful to avoid triggers (bright light?? no idea how that works, but I've had fewer migraines since getting my amber-tinted glasses, special lights at home, and blocking out all the windows where the sun shines through)
But of course you can't stop them all, and then when I do get a migraine it's easy to think that maybe it's "my fault" for not being careful enough.
The migranes that don't go away are the worst - because it's not something most people can really comprehend, so I get a lot of "nah you're just being over-sensitive" or "everybody gets headaches sometimes, maybe you need to eat/sleep/etc better". Often the only thing that can stop them is getting infusions at the hospital, but it's so easy to internalise that maybe it's not as bad as I think and I should just get over myself?
*sigh*. migraines.
ive been getting migranes since i was three years old, now im fourteen and all i get is unhelpful advice or stupid reasons like "mabye its just the weather" i wish people would just accept that this is something i cant controll and if i miss school because i cant stand because my head is crippeling me, i dont want your unhelpful advice or some "magic cure".i want to be left to rest and get better, i dont want to hear "mabye you should give up caffeen" because no matter what i try they dont get better and EVERYTHING anyone else could possibly think of ive tryed!
im sorry if im doing just what this video is complaining about, but i couldnt not say anything. I've suffered from severe chronic migraines and know how horrible it is! have your doctors taked about blood pressure medicines? it worked amazing with me, and no i didnt have high blood pressure, but i guess something in the medicine works. at least here in Norway its fairly normal treatment for migraines (my doctor said) so chances are that your doctors have thought about it, but since you didnt mention any medicines i just felt like i had to check. again sorry if this is just what you dont wanna hear, but knowing how horrible migraines are i just had to say something...
I hate migraines, sorry
+DebraYork have you considered a STIM? I had a brain bleed when I was 22 and it triggered my genes for migraines. After ten years of regular pain, my migraines went into status migraineosis where they never stop. Meds, nerve blocks, Botox, nothing helped. Have you tried all of them? Eventually I found my way to a neurosurgery who had me trial a neurostimulator. The trial was amazing. So I had one permanently implanted in my head, the battery pack in my back. It's always on and I have 70% reduction. Look it up, neurostimulator (mine is Occipital nerve STIM from medtronics). It's the 'final step' but if you need it, look into it. There's a Facebook group too who can answer questions.
"I can't avoid the truth that this is the body that I am in". Yes. Yes, so very much. This applies with mental illness as well. I've struggled with it for much of my life, letting myself think that is my fault. It isn't. We all have to accept it and learn to grow from it, and figure out how to keep going.
Hank
Thank you for posting this. I happen to have a crippling, chronic stomach pain that is as of yet undiagnosed. This pain has kept me from going to school, sleeping, eating, and just generally being a normal person. Some people are very considerate, and they understand that this is not happening because of something I am doing. Others, though, always ask me why I am throwing away my life, or why I am faking sick to get out of my math test, or why I can't just be okay. This video showed me that your illness does not define who you are, and that it is not your fault! So thank you, Hank, for explaining to me that being sick does not mean that you are an invalid, or a weirdo, or anything else. DFTBA
YES YOU GET IT THANK YOU!! Ulcerative Colitis is a major pain but it's nice to feel supported by someone who truly understands my pain. I feel the exact same way you do. I've found I can live a happy life even with this disease and I refuse to quit fighting and act like my life is over because it definitely is not! Thanks for this video.
Oh god this was so welcome. Hope you feel better soon.
This is actually unfortunately just the way our society functions. According to Talcott Parsons (Sociologist) we are supposed to behave in a specific way when we are sick (e.g. Go to the doctors, take time off work, take prescribed medicine etc.) in order for society to function properly. However with chronic illnesses we are not able to fulfil these steps as easily/we have different ways of dealing with it because it is chronic. This essentially throws people off because you're not behaving in the expected 'sick' way, and by giving you advice they feel they are helping you fulfil that role when that role cannot actually be fulfilled.
I have no idea if that ^ half ramble made any sense but as someone who has studied sociology it was interesting to see this theory actively being experienced by someone.
Hope you begin to feel better soon Hank!
DFTBA
+
Kirstles +
Very much relatable
Needed to hear this today
Thanks, man 👍👍
++++
I have chronic Lyme disease and it has eaten away at my body for 13/14 years of my life. Mine is quite severe and I constantly get people telling me they know how to "cure" it. The only problem is there is no cure.... Only remission if your lucky. People tell me to eat healthier but what they don't know is I'm already vegan and I don't eat refined sugar, gluten and anything processed. I eat extremely healthy. People also tell me to exercise more, but what they don't know is I'm in excruciating pain ALL the time and the most I can do is a 3-5min walk on a "good" day. People tell me to get off my meds and go the natural route. If I do that my infection will grow and keep growing until I'm dead. People just don't understand. I look fine from the outside but I'm slowly dying on the inside. I'm starting IV antibiotics in October and I'm just hoping for remission. To all the people that are suffering with a chronic illness, I know it's a long hard road that is filled with darkness but...
But one day there will be a light, even if it's small. Stay strong everyone💚
I'm sorry you have to go through that. 😢 I hope you are lucky enough to go into remission.
+
Respectfully suggest that you keep searching for modalities of improvement. Being being vegan is most beneficial.
unfortunately, there is research that shows most MD's are 10 years behind the research. so, good to do your own research. nutritionfacts dot org is excellent resource for current research that is reviewed for bias and being good research procedures.
Hyperbaric Oxygen Therapy (HOT) is gaining recognition as a healing therapy. Forcing more o2 into blood and cells promotes healing. there are more therapy centers now than even two years ago, yet spendy.
the work of Nathan Pritikin showed/published in 1974 how diet & exercise could cure heart disease, the nation's leading killer, then and now. Therefore, I do not prescribe to the idea that one is stuck with one's current medical calamity. It is part of one's life experience, yet, somewhere there is another answer waiting to be discovered.
Life is to be enjoyed. Even a greater challenge of mind over matter when in chronic pain.
I have Chronic Lyme too! I get the same thing all the time. Just finishing a year and two months on IV antibiotics, and am finally starting to get my life back. I understand just how hard you have to fight daily, and am proud of you for staying strong. Us Lymies have to stick together!
2,5 years ago I got what I thought was a bad depression (not my first), so I excused myself from work for a few weeks and waited it out. It didn't go away. That's when the "Maybe You Should Just"s started. Maybe I Should Just: take vitamins, go outside, go for a nice walk, do something fun, just not be so negative man!
Like I hadn't considered that before. Like I wasn't fighting this with everything I had.
Turns out it wasn't just my regular depression, but a burn-out. Followed by CFS and a diagnosis of Aspergers. Now that I'm finally paying attention to my health I've discovered stomach problems, digestive problems, ankle problems, high sensitivity. anxiety, chronic pain in several places and just this week: vestibular migraines! But I'm sure I could've just cured all that with taking a walk and being positive, right?
I suffer from epilepsy and depression since 6 years. On Monday i will start working for the first time in 2 and a half years. Good luck on your journey dudette!
Positive vibes to you!!
That's a very familiar story.
Advice about depression from people who don't understand depression is basically just "Stop being depressed"
I'm trying so hard not to look at that monster zit.
Dose the zit have a name
+Marie Labedz it's George, his and John's long lost brother
Why put more suck into the world?
Bruh everyone deals with acne calm down
I didn't even notice that thing, and i'm surprised that I didn't. That thing is huge!
I am so grateful for both Hank and John talking about their chronic illnesses. It does a lot for destigmatizing our illnesses to see people who we really respect and look up to also understand those struggles. Not just that, but share their wisdom and support. So thank you. You really never forget to be awesome.
I've watched this video several times now and I can't stop thinking about it. I've suffered from a chronic ailment most of my life, with continuous (in varying degrees) pain for over eleven years. I've heard every cure and prayer and excercise regime there is. At this point I'm frustrated by even some of my doctors making me feel like it's my fault. I am so thankful you made this video, as it allows me to communicate my feelings with people I love and validates a lot of what I've experienced. We all have SOMETHING... Right? I'm so impressed with all you do and I'm equally impressed that it's not that you "don't let your illness get in your way" it's that you confront your illness and try to practice self care and know when to admit you need to address medical stuff. You inspire me daily. Living a full productive life while dealing with chronic health issues is not an easy road and I couldn't wish it on my worst enemies, but knowing I'm not walking that road alone is comforting. Thanks!
This video gave me chills, I have Addison's disease and hypothyroidism and I always hated when people offered advice but didn't quite know why, now I know I was subconsciously thinking it was my fault, as stupid as that is.
Thank you so much for this, I feel like crying (happy tears mostly).
As a therapist with spiritual leanings I frequently come across practitioners who say every pathology has its genesis in the emotions, and that there is a purpose to everything. I met a few just this weekend at a meditation retreat, and I was so GLAD when the teacher, in the most directive thing she said all weekend, said "I know there's a sort of New Age-y belief in universal purpose and that if we just investigate our emotions enough we'd be cured, but I don't buy that, and it just ends up making people feel blamed for their own suffering." Yes. That. Thanks, Hank!
Rebecca Todd yup!
haha people try to heal me from being in a wheelchair all the time.....they never ask if I want to walk! I don't lol..... People do need to learn to listen more rather than give advice for sure! Thanks for a great video!
So much of this is almost word for word a rant I've heard many times from a friend of mine who has Crohn's and constantly has people telling her to eat this or that or take this or that out of her diet, sometimes even after she explains that what they're telling her to eat more of is something she knows from experience causes her problems! Even though I understand the urge to offer advice like that if you think it might help, sometimes it amazes me how unwilling people are to accept that she and her doctors know her body and her illness better than random people, and that really the only thing that helps is her medication.
I think I really needed to hear this today. I've been struggling with my depression and self-blame. Thank you
I have Narcolepsy. Which means i fall asleep at the most inconvenient of times. I don't sleep well at night, and occasionally get muscle spasms in my face or very temporary paralysis when waking or falling asleep.
On one hand i don't get the problem Hank does about advice, because people don't know squat about it.
On the other hand, i get really dumb responses like "Oh! So you have a reason to sleep in class" or "That's so cool!" Almost as if I actually want this condition that is not only embarrassing, but it makes it so hard to really accomplish anything because I keep getting interrupted by me falling asleep. And it's taxing on my relationships because half the time, the people around me aren't sure if i'm dozing on them or when i do doze on them they get frustrated.
I get similar dumb responses to my anxiety, depression and ADD. People, even my friends or parents, will make comments that make me feel like I asked for my brain to be this way.
I have narcolepsy too and just found out and all my professors were like "ohhhhh that makes so much sense... So my class isn't boring!" It was a relief actually to find I have narcolepsy because the response to narcolepsy is always more understanding than it was when I explained I was depressed... Do you have medication for it? I literally had a one day turnaround life change when I got the medication, I can't really nap anymore now. The life adjustment is weird but I am so glad I got the medication.
danininja94 from what i know, there are various medications used to manage Narcolepsy, each with it's various pros and cons.
I take Modafinil (Alertec, Modavigil, Provigil) which keeps you awake, but does not necessarily boost concentration or alertness.
Methylphenidate (Concerta, Ritalin) and Dexamfetamine which are also used to managed ADD and ADHD have slightly different effects. What do you take?
It does help, putting a face to the devil. The next step is managing it, which has it's own set of challenges. I do still regularly take power naps even while on medication because i find it helps keep me alert. I've also cut my caffeine intake in case it messes with my sleep patterns.
+Si Ian Tan I take Nuvigil, it's apparently the new version of provigil, but since I have anxiety if Nuvigil was too much I was going to switch to provigil. I've never met anyone else with narcolepsy (outside of a 7 year old girl from my karate who incidentally also shares my birthday, I think she stole my life!) so I'm relatively uniformed on how other people actually experience narcolepsy. I also regulate my sleep a lot and since it's a very recent diagnosis I started finally getting my sleep schedule actually working about two weeks ago and I feel alert and awake for the first time ever. And I do have more anxiety and need to have a more structured life in general, especially with social stuff, but overall it's amazing to experience being awake. I do have trouble understanding how anyone can mentally survive a full day, I get so exhausted mentally and emotionally without naps now because I can't really turn my brain off and rest the way I'm used to like I did before.
+Si Ian Tan I've cut my caffeine too, I only drink caffeine or take a nap when I've had a particularly stressful day the day before or for some reason I didn't get much sleep. Before that was how I survived, now it's more of an in case of emergency situation, like this past week my dog passed and so I've been napping and drinking so much caffeine to survive work, because my dog has slept in my bed and kept me going for the past 12 years and so without her I can't sleep really. So the two weeks before that it was beginning to get really good and I was getting a good schedule and now it's more like pre Nuvigil but still slightly better except I miss my dog so much. But yeah this week I have napped so much because I can't really sleep but before it was like one or two naps a week instead of 2-3 a day.
I can't tell you how many time I've come back to this video. It has honestly helped me a lot whenever I have problems with my chronic and mental illness. Thank you for making this, Hank.
I wholly agree with this video. as a very young person (15) with stomach ulcers people tell me if I just stop stressing and take anti-acids they'll go away. I've had them for years and I've done everything to try to get them to go away, I've stopped eating some of my favorite foods, taken up yoga, religiously taken medication, and have tried my very best to relax like advised. it sucks to feel like a illness is your fault. im super late to the party but this video made me feel a little bit better. thanks hank.
This applies to more than illness as well.
I once wrote a poem about my abusive parents for a creative writing class, and one of the pieces of feedback the teacher wrote was on a section of the poem where I stated something that happened to me. The teacher had written that it was a "powerful image". That really, really hurt for me to read. Because while I understand that it was meant as a compliment to my writing, I read it as "you did a good job making this up for reader impact", as if that very real experience of mine was in fact fictional, crafted just for the poem.
I think when we are used to having our experiences either denied or blamed on us, it makes us more sensitive to it, so that well intentioned comments start to come across in the same way. The most helpful response I've received upon sharing something vulnerable, painful, and scary for me was acknowledgement. The person who responded essentially said yeah, that's a real issue, I've dealt with it too and here's how. It's one of the few times where I really felt like someone wasn't just being polite or pretending to care, but really did understand my issue, acknowledge how it affects me as well as other people, and make me feel justified in my feelings.
People get like that with mental illness too and it makes me so scared to tell my teachers that I didn't do the work they set in lesson because I was tired so couldn't concentrate because I was having a major depressive episodd in case they're like "Oh you should just get more sleep, you're just using depression to get out of doing work". Like I get 8-9 hours of sleep every night. If I slept more I'd get told off for either being late or not finishing my homework.
John and Hank have such a good way of putting emotions into words, it's incredible.
This actually brought a tear to my eye. I really needed to hear this today. You just put into words what I've been feeling with my chronic illness that I couldn't quite pinpoint for the last several months.
As someone with depression, sever anxiety, trichotillomania, AND IBS... This is very relatable and I thank you for this video. So so much.
Nearly 5 years later and this is still the video I send to people to help them understand how I feel because it's just so on point. And I also come back here when I was made insecure by people again to remind me of why I feel this way. This video really helps me a lot to this day
I suffer from frequent chronic migraines and I completely agree with this video. I've had this feeling for a while whenever people tell me some new way to cure it that "definately works" but that, for some reason, science hasn't found out yet, but I've never been able to articulate those thoughts. In my opinion, the best way you can help and support someone who is suffering an illness is to offer emotional support, not tell them how to get better.
This was an awesome video, Hank. My dad has MS; he had his first attack a week after I was born nearly 22 years ago, and was diagnosed a few months later. It affects his balance and has basically robbed his left leg of any use. It was a slow process over the years, but now he's bound to a walker, and even that can only be used around the house (any longer distances are dealt with a wheelchair), and he's not even 60 yet.
His older brother is extremely health-conscious and is in amazing shape. He constantly tells my dad what he needs to be doing through the use of excruciatingly detailed and complex rituals and remedies.
We know it comes from a place of care and love, but it always comes off exactly the way you put it, as it being my dad's fault for not doing these things prior to his disease. Obviously it's not my uncle's intention to come off that way, but there's only so many times you can hear the same spiel over 20 years before it becomes condescending and of little worth.
This may not sound like a thank you comment, but it is, haha. Thank you for your honesty and putting your feelings into words, for the latter is something I'm not very adept at, but get better at with each Vlogbrothers video.
Dear Hank... Do you think Tom Hanks signs his name as THanks?
I really hope he does, at least some times, and with a smiley at the end.
He should start a charity called the T. Hanks Giving Foundation that gives poor families turkeys to eat on Thanksgiving.
If not, it is an opportunity waisted.
He doesn't. He usually just uses Hanks or Hanx, from what I've seen of him online.
Oh my god, Hank, this is so right. I've had lupus since I was 9 years old, and everything about this video speaks to my experience. The other thing is, when you have a chronic illness, you have to make decisions about how you want to live your life that balance the risk of a flare-up with being happy day-to-day. When people tell me "if you just stopped eating everything you loved, started exercising in all the ways you hate, and devote every minute of every day to your health you might be cured" my response is, "well, shit, I'm keeping the lupus."
It seems like there's a discourse of recovery that stems from our discomfort with the foreverness of chronic illness, and it's an okay discourse sometimes, but the problem is that it leaves no room for the experience of the chronic. Part of the loneliness of having a chronic illness is the lack of discourse about illness that lacks a narrative trajectory (we do not fit either into the tragedy of illness that leads to death, or the inspiration of achieving recovery). The more psychologically healthy thing for ME is to say that I and my lupus have to live together for, probably, the rest of our lives, and it's better for me to manage my illness, to live with and sometimes through it, rather than to fruitlessly try to fix it.
Thank you for this, I could never put words to the feelings that I'd get when people would give me 'advice', until a friend sent me this after I took a leave off of work for Fibromyalgia and mental illness. Sobbed for about 15minutes, thank you for putting it into words so perfectly!
Hank, back in 2013 when I was first diagnosed with irritable bowel disease (but more in line with ulcerative colitis), I found your channel when I was incredibly I'll and bed ridden for months on end. Everything you do, from travelling, to going to events, to even walking around town, gave me hope. this disease had such a strong hold on my life and seeing how you've carried on regardless of your struggles has pushed me to move on.
I went from being on Asacol, which stopped working 2 years ago, to being on a BRM (Biological response modifier), remicade. I've been in remission for a year and a half and the people who told me it was because of their health ideas all rejoiced and said how thankful I should be for their advice. really it's just me being on the proper medication and following my doctors advice.
you're one my role models when it comes to living with Ulcerative Colitis. your content gave me something to be happy about when there was nothing to be happy about. now it inspires me to continue living life to the fullest
Chronic migraines. "Get more sleep" "Drink more water" "Use your phone less" "wear sunglasses" "put your hands in ice water" "relax" .
Thank you, Hank. As a person who struggles with mental illness, I've only recently saught treatment mostly because for many years I felt that I was at fault for my brain working, for how my soul feels, and therefore I should be able to fix it. I've come now to recognize that our bodies (which includes our brains) sometimes just don't work the way they're supposed to and I don't have to beat myself up over that or treat others as though they have control too. Anyway, thanks for sharing.
Heck yes, that's completely how I feel. Even when I have a tiny tiny cold, I beat myself up if I miss an hour of sleep, or don't eat the right healthy foods. It's even worse with my mental illness because I am convinced that I chose to have depression or an eating disorder and thats just fueling the thought spiral downwards
PREACH! break down the stigma of chronic illness!
It's John's fault
In Our Stars
Preach!!!! So needed to hear this
This actually helped me with my depression. (Yes I know that people don't think that is a illness)
It really helped me with my depression too! And don't worry, I know many people don't think our illness is real, but I'm pretty sure that Hank and most of the nerdfighters in the comments will agree that it is. Go easy on yourself and have a nice day :)
WhatsShakingBacon one it is real and he and how to adhd have helped me with mine
I agree. People always try to give me "miracle cures" for my asthma. They also like to tell me that I shouldn't work where I work (a big box hardware store) because the dust must make it worse (it does not help, but it certainly isn't worsening my asthma long term). Like I have a choice to just quit this amazingly helpful job.People also like to tell me that if I just eat better and exercise more, that my asthma will go away. They keep going even after I tell them that my asthma is from permanent lung damage caused by a crappy anesthesiologist and second-hand smoke. There is no getting rid of it and it is not from any choice I made in my life, but people don't like to imagine others' lives as being as complex and random as their own.
I don't think it's just people not liking to imagine other's life complexly. I think it's at least partially the very human tendency to look for solutions. For yourself, you probably tried what is possible and know what isn't. Other people don't, so they go for the instinctive thing to do: Try and find a solution.
+wiet111 I personally think the random aspect of life is more of the issue. people don't want to consider that my asthma is random and incurable (nothing that will truly help except medication) because then it could happen to them. so they want there to be a solution or a personal fault when there is none.
RealToWonder That too. Randomness is terrifying.
I think people just want to try to relate in some way. Both my mother and my husband have asthma. If I meet you I might share what worked for them. That doesn't really mean I think this is the 'miracle cure' for you, I realize that your situation or triggers are different. I just think it is an interesting anecdote how my husband found his 'cure' after more than 10 years of thinking there was nothing that could be done.
I am diabetic and have been diabetic for 2, going on 3 years, and I have had people, within my own home, tell me how to get through this so I won't have to take my insulin. My youngest step sister suggestion I join her in her gluten free diet. I got into an argument with one of the sisters I'm related by blood that ended with me saying "I'm diabetic" and her saying "Who's fault is that?" despite the fact that we both have an older sister who has been diabetic for well over 15 years. Despite the fact that when I came out of the hospital my doctor told me that it wasn't anything that I ate or that I did to cause this, I'm still sitting here thinking "The heck did I do to make this happen? Is this my fault? I can't really do anything to make it go away either."
I appreciate this video, and I GREATLY appreciate this title because it's something that I've been needing to hear for the past few years. Thank you.
A gluten free diet is incredibly unnecessary. I'm just a bit curious though since the doctor said it wasn't your fault. If you don't mind humoring me, what have you been eating?
My mother in law had her pancreas shut down soon after her first pregnancy. She had diabetes from then on. She's an incredibly healthy woman whose genes and bad luck landed her wth an illness. If anyone ever had the gall to tell her it was her fault, I'm sorry but I'd have to punch them in the face. What a terrible thing to say to a person.
people confuse the 2 types and it can be really annoying i feel u
I did/do not eat anything that a normal human being does not. Remember: Diabetes is genetic as well.
I know this feeling so well. Thank you for taking the time to articulate this, Hank- it made me feel a little less alone, a little more validated as a fellow human being living with chronic health issues.
As a person with chronic illnesses who experiences this feeling all the time, it is so validating to here such a role model like you feel the same. Thanks, Hank.
WOW, I GUESS aromatherapy, acupuncture, going GF, veganism, "forest bathing," and mindfulness can all cure central pain syndrome? Cuz that's what people keep telling me!
Chronic eczema and central pain syndrome must have the same causes, I've had exactly the same recommendations!
... and judging from your comment, about the same level of success.
What in the nine hells is "forest bathing"?
Don't forget anxiety and depression. I told they can be cured through that stuff too!
Not tried the alkaline diet? Just kidding.
Hahaha oh my god the alkaline diet has been suggested to me too!
This made me cry. Thank you for understanding. Love from Paraguay
Thank you, Hank. I've been struggeling with back pains and people tell me all sorts of things to make it better, like which specific sports I should do and whatnot and it makes me feel so much like it's my fault that I had so much pain. I'm only 22, so people tell me how awful it is to have that at 22 (or 21 when it started) as if I didn't feel bad about it already. Many people in my age don't exercise a lot and sit in libraries and hang out and still they didn't have to experience what I had to.
This video made me feel better because I know they all mean well but sometimes they hit me deep into my insecurities making me feel like it was my fault that happened to me...thanks :)
This video made me cry (mostly) happy tears. I am a 21 year old who suffers from fibromyalgia and even though I have a supportive community both online and offline hearing someone who I respect say what I haven't been able to put into words overwhelmed me.
Usually if an old aquatinted asks me what I am doing with my life, I awkwardly skirt around my problems with college and say I've had some health issues. They say something like "get well soon", and I try to hold back the bitter "I won't" that I want to yell. They don't know how much I wish I could or how much I wish I really was using a cane because I sprained my ankle like they assumed.
I hope this video helped other people who may not be lucky enough to have a support system, to deal with they're chronic illnesses. You are not alone ❤️