The Guilt and Shame of Life without a Diagnosis [CC] 

This was really helpful. My mom keeps telling me that you should only get help for mental illnesses if it makes you unable to function at all- I think that's bullshit. It's about if you're suffering or hurting. Getting help before you get that bad is just as important.

Also I find, being very put together confuses people as well. People expect that if you're I'll, you must have a baggy sweater on and slippers with a box of Kleenex... like if you dress up and actually look like a human, you must not be sick at all

Oh if you use disabled parking in the US and aren't in a wheelchair, people yell at you and leave nasty notes on your car. People have even called Social Security trying to get people's benefits revoked. The stigma is real...

Testimony: It took nine years for me to get one diagnosis, and longer to get the other two. Doctors are TERRIBLE about taking women’s complaints seriously. I hate to advise capitulating to sexism, but you only have so much energy - so if you can, bring a male-type person with you. It’s astounding how much difference that can make; apparently if you’ve gotten a man (any man) to take you seriously, doctors think it’s more likely that you haven’t just made up the whole problem. Getting your male person to nod along while you explain is even better. Seriously, if you haven’t got a male person handy, hire someone. I only discovered this by accident when I reached a point where I couldn’t drive anymore. When my husband or my dad was the one who came with me, it always went so much better than if it was my mom, my sister, a female friend, or even my sister-in-law WHO IS ACTUALLY A DOCTOR. I’ve since learned this experience is common to many women both here in the U.S. and (apparently) everywhere else on Earth. BTW, if you’re under the impression that it’s only YOUNG women who suffer this - sorry. It doesn’t get better. :-(

I think one of the hardest parts of invisible chronic illness is when the symptoms are intermittent. Friends and family think you’re faking it. Even doctors doubt you’re telling the truth if one day you can’t walk and the next day you can. Sending giant positive vibes to everyone who knows what I’m talking about.

I think there is definitely a stigma that lies within a sick person, that hasn't been diagnosed. But I think that the doctors make you feel the worst of all about it. Take for instance autoimmune disease, it's hard to get a diagnosis, because ana tests will only show the disease/illness, when it's present and flaring...😠 some people spend a lifetime guilty because everyone thinks they are a hypochondriac. Thank you to you, and all of the others who publicize, chronic illness/invisible illness/undisguised but very there and very real illness.

Something you kinda mentioned in passing, about taking up resources, I hate that mentality because it's been reinforced by NHS employees I've interacted with. I had to take my fiance to the hospital once because he had a rapid heart rate, fever, couldn't move, couldn't get warm, and couldn't really breathe. We got there at 6 AM, and after seeing the GP, who was rude to begin with, she said, "You really shouldn't have come here, you're wasting NHS resources." Really. My fiance struggles with depression and anxiety, and that was actually one of his fears about getting ill or having a break down, that he would be "wasting the NHS resources". I was furious. He pays for his insurance through his taxes, he has a right to use those services.

I hear of more and more people who are misdiagnosed or not diagnosed at all because the doctors or the people around them don’t believe them. It’s therefore important to speak up about these things, great vid!

I definitely struggle with this hierarchy issue sometimes. I have autism, depression, anxiety, and PTSD. I'll be honest, I sometimes feel like I don't even belong in the disability community because my issues aren't physical. But you're entirely right; it doesn't matter who has it "worse" and it doesn't work that way, anyway. I still deserve treatment just as much as anyone else with any other disability.

I had a dream LAST NIGHT that I was in a bar (apparently I wasn’t housebound) and someone stole my wheelchair because they didn’t think I looked disabled enough for it. It’s something I really worry about sometimes. (I then of course woke up and spent the next hour mentally teaching these dream people about ableism and how I didn’t have to prove my disabled-ness.) P.s. excellent hair!

Okay this video has convinced me not not feel guilt or shame about using my cane today. I’m going to the pride parade today, and I’ve been super nervous about bring my cane. Cuz of you, I’m gonna bring it and prevent myself from immense pain. Thank you 💖

It took nearly 20 years for a concrete diagnosis of RA. I spent 15 or so with fibromyalgia diagnosis and 8 or so with "undifferentiated connective tissue disease." Finally I spent my entire savings and got to the bottom of it - at 47 years old. I never stopped looking

I can’t get anymore of a diagnosis than fybromyalgja which is basically a blanket diagnosis of ‘we don’t know why you hurt everywhere’. My friends won’t take the elevator with me. My dad doesn’t believe I’m actually sick. And they’ve tested me for arthritis at least 20 times. I just want somebody to say ‘we don’t know what’s wrong but something definitely is’

I really relate to this as someone who went through the first 22 years of my life without an autism diagnosis, just thinking I was “bad at being a person” and feeling guilty for struggling with university and getting a job

What an AMAZING video! So many quotables! I really resonated with the one about needing to push yourself 5 times harder in order to be able to contribute as much as abled person, ugh! The feels!

Girl do a tutorial on this haaaaair

Im so glad that I am not crazy for having all these feelings all the time. Even with mental health diagnosis. But like having a sleep problem that isn't diagnosed and being terrified that Im just being lazy and that the excess exhaustion and not going to things because of it is because Im just using it as an excuse.

That HAIRRRRR

I feel this. I always feel like my health problems are very minor compared to "people with real disabilities". I'm always aware that things could be worse, so I should be living my life to the fullest, try really hard, be the best I can be and not complain about anything because other people have it worse. I keep thinking I'm not allowed to even call myself in any way disabled, because there are so much worse disabilities than what I have. After years of not really knowing what's wrong with me, I now have a couple of diagnoses for my social anxiety and depression. I do appreciate having something, but I feel like it's not the whole story. Mental health diagnoses can sometimes be a bit of a pain when you go in for physical ailments because some doctors seem to assume everything is therefore "in your head" (which is often where it is, but not in the sense they think) just because you have anxiety or depression. So I sometimes get episodes of pretty severe PVCs (hopefully, presumed) and classic migraines with auras to the extent where they affect my day to day life pretty significantly, but a. I keep feeling like other people experience worse symptoms than me so I shouldn't complain and just get on with it and b. when I go to the doctor with a legitimate (in my mind at least) concern when my symptoms get worse or different from usual, they usually assume it's just because I have mental health issues or I'm a woman and have PMS or whatever. Thankfully I'm currently doing OK and I try to tell myself I don't have to push myself to unnecessarily high standards because I know what my limits are and I know that if I stick to them, I (and the people around me) will get more out of me. But it's not easy. When I hold back and refrain from doing things I seemingly should be able to do, I do often second guess myself even still... But really, ultimately, when I demand less from myself, that's usually when I get more out of myself and surprise myself positively by the things I can do.

Thinking back to when I was undiagnosed AND hadn’t figured out what was wrong with me (because I figured it out way before anyone else even believed there was something wrong with me), I think I found it extremely difficult to give myself permission to rest as much as I needed to and to access the accommodations I needed to (and to give myself permission to use the ones I did have access to), and that contributed to my condition being SO much worse that it would have been otherwise. I think I’m still paying that price. I think if I’d been able to rest without feeling that pressure to function at a certain level (at any level, really), I would be so much better off today. I was bedbound much of the time and couldn’t even allow myself to fully acknowledge that I was in fact sick, and I definitely couldn’t use that word. It’s really sad to me. And angering and all the things.

This is something I am struggling with so much with right now. I dread meeting new people or catching up with people I haven't seen in a while because I'm not working right now and though I have one thing diagnosed i feel like a loser and embarrassed to talk about it. I've never heard any one else talk about this. Thank you for sharing

Thank you so much for this. As someone who is struggling without a diagnosis or doctors who listen and take me seriously, this is something I needed to hear right now. I have trouble accepting sometimes there are things I can’t physically do or that I know I will injure myself if I do them. Thank you for being a ray of light. You are a beautiful person inside and out. (Your hair looks amazing today, by the way!)

I have an ...interesting relationship with the world 'lazy.' About 70% of the time, I can joke about being lazy (ie. "I'm not doing this because I'm lazy lol"), but the other 30% of the time I don't, and if anyone else makes a comment about me like that, even though they're most likely joking, I just... crumple. I got diagnosed with a chronic illness at the beginning of the year (I'm 22), but throughout most of my life I've had these symptoms but not know that I had any illness. To me, my symptoms were normal, and I sometimes wish that people had told me what normal meant to someone not ill, that is, what it means to not have a chronic illness. I thought that suffering when standing up was "normal", I thought that sometimes experiencing excruciating pain after eating was "normal" (though the pill has somewhat helped with that so YAY go birth control), I thought that spending half of my like helplessly dizzy was "normal" - you get the point. And because I thought that everyone else experienced the same things, I blamed myself for not being able to deal with them - I was lazy because I sat down instead of standing up like other people, I was pathetic when I curled up in bed after eating sometimes when other people got on with their lives etc. I don't feel that guilt so much anymore, now that I know that my normal does not mean sans-illness, but it's a conscious effort I make everyday to try not to feel so guilty, and I think that's a conscious effort we all have to make. Obviously we can't make a conscious decision to not feel guilty; that is... not how brains work, but we can make a conscious decision to try. And despite my rocky relationship with the word 'lazy,' making that decision has really helped me be happier with who I am.

"Something is wrong so please keep looking." My constant mood with doctors. Love what you say about the different things you bring to the table that another person might not.

Getting my bipolar diagnosis massively changed people's attitudes toward me. All of a sudden I wasn't just lazy and strange I had something people could have a vague understanding of. I'd been diagnosed a chronically depressed at 15, and it took til my mid-30's to get the bipolar diagnosis. And more recently I've been 're' diagnosed with Fibro and again that has helped a bit. Of course both of these are invisible disabilities so lots of people (including close friends and family) still tend to find it hard to accept that I have anything 'wrong' with me. Your point about intersectionality is really important too. I live on benefits because I am unable to work. I live in Cornwall where the mental health services are terrible. I'm 45 and live alone, meaning there is no-one to do the washing up/remind me to wash myself/help me with my medication etc. However I am a straight white woman with an MA, friends in my town and family 'only' four hours away. When my DLA got cut and I had to apply for pip I kept thinking about how much worse the whole process and system would be if I was black/homeless/learning disabled/in teens/trans/unable to have an advocate. I know I have it so lucky but it still took me three attempts to get my benefit, and over 5months without any disability benefit. Sorry this has meandered but people really have no understanding how important and validating a diagnosis can mean to oneself, and how easy it is to beat ourselves up because we don't have the 'worst' disability, use the disabled loo etc.

Thank you so much for saying ‘that’s good that my scans have come back normal, but there’s definitely something wrong, so please keep looking’! I’m still searching for a diagnosis at the moment, and it’s so hard to get doctors and specialists to actually want to look for what’s been wrong with me for the last two years. I just feel like I’m constantly fighting for doctors to care, and they just don’t, and I don’t know why. Thank you very much for the reassurance, you are amazing! ❤️

This is exactly what I needed to hear right now. I've been struggling to do "normal" things for years and have never been able to work a full time job in my life. Doctors always tell me I'm perfectly healthy but I know my body and I know something is wrong. I didn't even think I qualified to be called disabled until I found this channel, and yet when my disabled friends posted scales of how well they are doing despite their disabilities I wondered why I scored lower. Aren't I "healthy"? Aren't I "normal"? I'm now ready to start searching for a diagnosis, to demand to be heard and find a doctor who will listen. Thank you for being an advocate and raising awareness, without people like you I would still be struggling by myself, bot knowing how to get help ❤

The way you distinguish between guilt and shame is so powerful. Thank you.

I think you illustrated perfectly the imternal struggle of being disabled and chronically ill. "I want to live my life but will this make me sicker?" I'm just a sick person trying to live my best life. It's exhausting! Love you, Jessica ❤

Great video! I watched Britain’s Missing Top Model, partly because I used to be Sophie’s neighbour and also because I was expecting something that might actually challenge people’s assumptions about disability. I still can’t believe that the BBC exposed you to such awful bullying and I agree they’d have a hard time getting away with it, now. And as for challenging assumptions and stereotypes, they failed miserably. I’m just so sorry you had that experience. In solidarity xx

Thank you for talking about this subject. I suffered for many years of people stating “it’s in your head.” Or that whispersed look...she’s faking, she’s lazy.

My friend sent me something the other day that I really liked. It was a post that said something like living with an invisible disability is like living your live on hard mode with everyone judging you on regular mode. I have an undiagnosed illness with a bunch of borderline tests that ended up inconclusive. I had a really bad hereditary genetic issue that caused such heavy periods quite literally 24/7 when I was nine. I bled for two years straight and almost died because my doctor didn't want to put me on birth control and wanted to see if it went away on its own even though at that point it was going for two months straight. That either gave me permanent symptoms of iron and blood loss or set off something very, very similar. Now I can barely handle school. I don't get to run. I don't get to stand for long periods. I don't get to do much. I helped my friend paint a fence and I fell asleep in a lawn chair because I was so exhausted. My high school's tried failing me for the entire grade I was in twice because I failed PE even though they blatantly disregard any doctors notes, even when I get straight A's in any academic class. My illness is invisible. My illness seems to not even exist, even though I almost died and have had surgery trying to figure out what's wrong. But I'm seen as a lazy kid who doesn't want to exercise. I caught my own counselor saying so to another teacher when he read out an email from her about me. I'm seeing a hematologist now, hopefully we'll get answers, but my hope's not high.

Honestly thank you so much for this! I’m struggling with an undiagnosed chronic illness right now and it’s so hard

I still don't have a diagnosis. I just have a shit ton of problems and my doctor's just shrug and are like "well you have this. I don't know why. I'm just going to give you this medicine that treats this one small symptom but causes 20 other problems" and I get so written off and I feel so frustrated like maybe I'm just crazy? Maybe I'm making a big deal about things? But it's not normal to be in this amount of pain every. Single. Day. It's not normal to have migraines more than half of the days of the month. To be in pain on daily basis that throwing up is normal. My migraines make me completely blind. Not auras. Not spots. I go completely blind sometimes days at a time. But you know. That's just something my doctor's are not concerned about. My feet hurt so bad. On good days I just suffer through it because I have to work, and in retail I have to be on my feet, but on good days I have an hour before I'm just in excruciating pain. And I just feel so awful for needing help. And it's given me such awful anxiety that I struggle to go anywhere by myself. And I get shamed? Like I tried to discuss having a service dog with my doctor and it was met with an angry and belittling shaming. "What would you even use it for?! What good would a service dog do you?!" Which was not met well with "I dont know. What do blind people use service dogs for??.. you know. That I'm spending most days completely blind and fumbling through my house?.. much less a random place where things are unfamiliar and moving?" This is year 5 struggling every day with these symptoms. I've had so many different doctors. None of them seem to care. When I get a new doctor, I tell them my symptoms. They check my blood sugar and my A1C and then tell me I'm not diabetic. Thanks, I know, but nothing else is done. They all just shrug at that point and I'm written off. I'm so incredibly tired. I feel so bad. And I do just really want a name for it.

I was diagnosed with mosaic type (more than likely) down syndrome as a child but my mom never told me so I didn't find out it was in my medical records. I always felt bad that I couldn't keep a job but had to go to adult day programs. I am a valuable asset there and people like me is what I try to hang on to but sometimes I feel like I could be doing more and should be doing more. But I have a lot of physical and mental health conditions so I don't feel I can. I understand why my mom didn't tell me especially as a child but I wish she had as an adult. I would have known about my lung issues and probably not almost died 2 years ago and that's when I found out I had downs syndrome and reading up on it even though it is different for everyone a lot of the symptoms resonated with me. I don't feel quite as guilty for not being able so many people knew I wasn't lazy but thought I was sabotaging myself or something but now that is my disorder is known my friends family and treatment team are so much more understanding and now I'm just trying not to be so hard on myself.

This got posted within the first few moments I started breaking down over having to call out from work because of my undiagnosed issues. My brain was, "Everyone's been calling out sick, and I've been living like this for years, even if the pain's so much worse than normal," and here's this, validating everything right when I needed it. Thank you so, so much, Jessica.

'Diagnosis or not, you deserve inclusion.' This warmed my heart Jessica, along with many other things you said. And all those who have a diagnosis - a label word finally put on them by some other authority whose notion about your body is seen as more valuable than your own... - most know the guilt and shame by no means stops there. I wish to all those watching to meet other respectful and kind people, who spend their lives with better things than being judgmental.

Once I got my diagnosis it really did all lift away, partially because my (autoimmune condition) doesn't really impact me too badly now that we know what it is and can actually manage it. But before... oh before... I was just a lazy teenager with poor attention span and why oh why was I getting worse? Didn't I know my A Levels were important? I was such a good student when I was younger (this is a lie, I put in way more effort at A level but was too unwell to get good results, we just didn't know yet). Have I tried doing more exercise, eating better and getting more sleep - they say to the person who could sleep for a solid 14 hours and wake up tired, yeah, I'm sure lack of sleep was the issue. But at the same time, I didn't know what was wrong with me either and even though I knew something wasn't right I couldn't help think that maybe I was just really lazy? Turns out I am quite lazy, but that's completely separate to all of the things that were going on when I was 16/17! Diagnosis meant treatment, and for me, treatment means that I am now mostly unaffected. I know that makes me quite lucky. If you know something is wrong, keep pushing, it may take a long time but you can do it! My thing was only found because after a long time my GP decided to test for something 'just to rule it out'. You got this, it just might take a little while for the rest of the world to catch up.

Thank you for this. I’m currently undiagnosed, and if I had a pound for every time someone has said it’s probably my anxiety or in my head, I’d be pretty wealthy! At times I start to think it must be in my head. It’s tough, and frankly downright scary, but it’s lovely to know that there are other people who understand.🙂

Omg I watched Britain's Missing top Model when I was like 11! You were actually my favourite to win, I can't believe I didn't make the connection that was you!

Jessica Kellgren-Fozard! My experience. Hit & Run. 2 Broken legs - Mashed up spine. After 3 months in traction beautiful Physiotherapist helped me to learn how to walk again. 15 years later suddenly EXCRUCIATING PAIN between Shoulder Blades. Various Doctors said "That shouldn't be happening". But it was. They assumed I was a Junky, ignoring my History, & treated me with contempt. Doctor after Doctor for about a DECADE til one sent me for an M.R.I. Looking at the scan which showed lateral collapsing vertebrae pinching a Nerve Bundle the Doctor said "Hmm, You must be in a LOT of PAIN" love Steve Holliday

I don't have any physical issues but I have pretty bad ADHD and for so long I carried so much guilt and shame surrounding the symptoms of my neurodivergence. I was constantly called lazy, unmotivated, too talkative, too excitable, annoying, etc. and I really started to internalize all of those words. When I finally got diagnosed with ADHD, I knew the reasoning behind all of my actions and it made it so much easier to explain to people why I did certain things and I still get called those descriptors sometimes but I take it way less to heart than I did before because I know that there is a neurological reason why I am behaving the way I am.

I'm mentally ill, not physically disabled, but what you said about tasks you perform in your relationship was something I really needed to hear. Thank you.

Loved this video, I'm so tired of feeling judged "back off you arsehole" is literally hammered into my tongue from swallowing it so much

Thank you for this, so much. I’m really struggling with being undiagnosed. The people in my life get it finally, but I still feel guilty for sleeping so much. Or not going to board game night every week like I used to, or not going for walks, or, or, or...I only feel a tiny bit of guilt for using the disabled parking spot though. You get a permit for a reason. People who think we’re not sick or disabled cuz they can’t see it can suck it. Then the doctors (who can’t find anything to save their lives) act like doing tests is such a chore. Just type an order into the computer! You don’t even do the work; it’s the lab people. This is what you signed up for. Be the House we all know you can be!

Searching for a diagnosis has been just as, if not more stressful than my actual chronic illness. Thanks for the video

What a lovely lady you are, Jessica! I can really relate to what you're talking about in this video. I have struggled with guilt and shame a lot with my mental health. I think invisible conditions, whether physical or mental or both, put people in a position where they feel they're either "faking" or have to "prove" they're not faking, and that mentality leads to a lot of emotional hardship! I really appreciate you describing the lessons you've learned over the years that help put you in a healthier, more loving head space. I hope everyone, myself included, can learn to internalize these positive lessons. :)

I feel guilt and shame everyday especially when it comes to household chores (not so much now I live alone and I don’t have someone belittling me coz they say I’m lazy which is what my step dad did when I was living with my mum and him up until a few months ago), I have a full time job that takes all of my energy and I get home I’m just so sore and tired I can’t be arsed cleaning. And now that I’m really thinking about it I really shouldn’t be in the line of work I’m in. I was born with a condition called club foot ( I don’t know the medical name) but a really bad case, so my feet were turned so my toes were pointing towards each other but also the soles of my feet were pointing back. I did have surgery to correct this at 18 months old. I’m now 35 and still by the end of shopping I come out to the car walking how you said you walk but I actually start shopping that way it just get progressively worse. I don’t have a disabled car park card thingy ( and I think I would greatly benefit from having one) 1 because it’s really hard to get them in Australia and 2 I’m a very large person so I think people would largely think well she’s just fat she isn’t disabled.

I'm struggling with various health problems from 2016,started with heart problems,now being tired,dizzy and having headaches (my head is fine,I had an examination,nothing's wrong in there) I'm told to drink more water or move more (I'm a skinny person,I eat healthy and don't starve myself or anything), still,it's nice to get an advice but hearing this all the time despite trying to cope and struggling with problems everyday isn't that helpful. Now I'm trying not to say that anything hurts me because all I get is that look on faces "what again" and it's the worst when you can't relay on anybody and have no one to understand you I'm really glad that you made that video Jessica,it's important to talk about these things❤ Unless people see someone really struggling (like for e.g. person on wheelchair not being able to do something by themselves) they seem to think you just pretend to get attention or just are lazy. This can hurt on so many levels 😖

MAN what a powerful topic!!! My main nemesis is debilitating chronic migraines, and yassss the guilt and shame I constantly go through is so stressful!!! Constantly having to explain myself, constantly feeling guilty for not doing more (or feeling guilty for doing things that caused me more pain), it's a neverending cycle. But I know I don't have to tell YOU that, you get it. :) Thanks for talking about such an important topic (which is something you're very good at). :)

Thank you. Iʼm devastated that I still donʼt have a diagnosis (just a few abnormal lab results), but I canʼt put into words why that bothers me so much. You have explained it perfectly. Thank you so much for this video 😊

I actually voted for this topic and commented but was really confused when it disappeared! I tried writing out all my problems in concise way, but it ended up being so incredibly long and took over an hour to write. I don't think anyone cares enough to read it, so I'll try just to say a little. I started getting sick when I was 9 but my first diagnosis was when I was 17. Then 21. Then 23. Then several times at 24. That's just relating to the genetic disease and I have other unrelated diagnoses. I've had so much damage done to my body, not just from my genetic disease but from the surgeries and incompetent doctors. My genetic disease is called Multiple Endocrine Neoplasia type 1, MEN1 for short. It causes tumors in the pituitary, parathyroid and pancreas. They can reoccur at any time. I also have autoimmune pancreatitus (so I'm having pancreatic attacks all the time), I'm panhypopituitary so I'm on loads of replacement hormones, Addison's disease. I have dozens of incredibly painful tumors in my abdomen (I had several dozen removed 3 years ago, which were non-cancerous, but we don't know now. I'm looking for a new surgeon because my old one moved away). I have some mystery illness that's causing me crippling amounts of pain (it's the exact same symptoms I had with the hyperparathyroid, as they never went away, but the tests aren't showing it) but none of my doctors are willing to do anything beyond basic tests, won't put in any work, which I shouldn't be surprised by. Because of the war on pain patients, I, like many other pain patients, are being _forced_ off our pain medications because of government "guidelines". If doctors don't follow those "guidelines", they will be investigated and risk losing their licensed. I am now entirely bedbound. I'm attending to apply to try medical marijuana, but I have to pay several hundred dollars out of pocket just for them to even evaluate me. I'm disabled, I don't have that money. If I am accepted, I will have to pay for the medical marijuana out of pocket, because insurance doesn't pay for it. It may not even help my pain. (Pain patients have been suiciding over this. We are being punished for the actions of addicts. I don't blame them, I know they need help too, but why is it coming at the cost of the lives of pain patient? Nobody cares, either. The media only focuses on addicts, not pain patients. The handful of times articles _have_ been published, they quickly vanish.) I am 33 now, 34 in a couple months. I have been fighting since I was 9 years old and I am really tired of fighting. I am tired of being in pain. I am tired of begging for help. I am just so tired. And now my mom is very sick. She's the only reason I've gotten so far but she can't help me anymore. We can't pay for her insurance so she can't go to the doctor. I am afraid she's going to die. I am sorry, I didn't mean for this to turn out this way, but I just don't know what to do anymore and I have no one to turn to.

I always told people it was an enourmous relief for me to be diagnosed, and they always asked, "why? It's not like it makes your condition any better, things are still the same for you", and that's true, to an extent. But I cannot put into words the...... I dunno, the turmoil of having all these things that are Wrong with you, all these things you struggle with or can't do or are suffering from, and just........ not being able to UNDERSTAND it, not being able to understand WHY. I've struggled so, so much with feelings of self-blame, of isolation, of self-doubt, all because for so long I couldn't piece what was happening to me together, I didn't have a name for it, I didn't have a lens through which I could see what was going on with me clearly and understand it. And worse, people compounded those feelings of guilt and shame and isolation. Because I couldn't explain it and had no name for it, they didn't believe me when I was suffering, I was told it was my fault, it wasn't "real", I was just a baby or a liar, it wasn't "that bad". That mindset, and that feeling of "my pain is not real, my suffering is not important, I am to blame" has haunted me all my life. Being diagnosed did not solve all my problems or anything. It also didn't stop people from telling me I'm weak or a "faker". But it gave me a Word for what I was experiencing. It finally felt REAL, I could finally understand to some extent what had been causing me so much suffering all this time, and I had a WORD for it, a frame of reference with which to make sense of it. And it at least somewhat helped me to explain to other people what it's like, what I'm feeling, and why I am the way I am. I cannot feasibly put into words what a profound relief it was to feel like what I was going through was Real, and it Mattered, and it wasn't just some terrifying nebulous thing that plagued my life seemingly without reason, or end. I don't know if I've ever said it before, Jessica, but in case I haven't: Your videos, and your openness in talking about disability/illness and everything that comes with it, are incredibly important to me, and I'm sure to many other people. Our experiences and lives are very very different, but I've often connected to your stories and feelings in a way I haven't been able to with people who haven't dealt with disability/disabling illnesses. Thank you,,

Really needed to hear that part about how what you're able to do not being less worthy than the physical tasks others can do. That was really getting me today but it's so true!

Actually crying right now. "You will get there" and "I'm here for you". Right in the feels

this comment may get lost in the sea of other comments, however i would like to say thank you. thank you for giving me the courage to go get help for my depression, thank you for helping me to see that my condition matters. thank you for just being you.

The 👏realest👏talk👏. Also life with a ~partial~ diagnosis. Weeeee! -PinkJess

THANK YOU for this! So-called “invisible illnesses” (I hate that term) can come attached with SO much guilt and shame. It’s exhausting. It’s amazing how much knowing you’re not alone can help.

That’s the problem with this world Jessica to many people have negative opinions about other people, not enough loving going on as far as I’m concerned

You know i‘ve generally accepted these things about me, plus i actually have a diagnosis for my illness. But on days where i‘m not doing well mentally, and suddelny start questioning wether the ableism i experienced was „actually totally reasonable, i mean how dare i have a chronic illness that‘s not well known am i right“ i come back to this video and similar videos, to remind myself, that i am allowed to live my life without guilt, and that i deserve accomodations for my illness. So thank you for picking me up on my bad days.

This video made me cry because I feel so much guilt and shame over my mental illness and for someone to tell me what I've been needing to hear is overwhelming.

When you said your feet pointed more inwards when walking with tired legs, i literally shouted "ME TOO" Like i thought i was just a weirdo

I wish I could send this video to all the doctors who ignored and gaslit me before, those of us seeking a diagnosis aren’t always doing so because we’re “special” or “neurotic”-the general vibe I get from being gaslit is that they see me in that light....-but because we often face so much shame and guilt daily and having a diagnosis is not only validating of our struggles and pain, but can also help us find treatment to deal with our conditions in ways that help us be healthier and feel better and feel less shame about our symptoms or they ways people interact with us. It’s so unfortunate that so much of the “responsibility” for our disabilities/health conditions is put into us as if we’ve done something wrong or haven’t done the right thing. It can really make us feel like people see us as lesser as a result, less worthy of patience, support, care, empathy, humanity. Thank you so much for making this video, I really needed to hear this!

I just had a day of a bad flare up right on top of finals, and all day as I struggled to walk around campus I kept wishing I had a cane, but last time I had a flare up I just couldn't bring myself to buy one because of embarrassment and the shame of people I used to know seeing me and wondering why I was using a cane when I didn't use to. I end up trying to discreetly use my umbrella, it's absolutely ridiculous. Maybe if I get some courage tomorrow I'll go to Walgreens and actually get one so that I don't feel trapped at home in my bed during flare ups. Thank you for your video it really made me feel a lot better about this.

Every doctor and caregiver should watch this video. So well expressed. Thank you , Jessica! ❤️

I just began being very sick where I'm in constant pain and have started needing a wheelchair to get around but no one knows what is wrong. I needed this video, thank you. I have been told by doctors at the hospital not to go back. Your videos have really helped me through this so thank you

This goes for psychological issues as well! I spent my whole life feeling like I was inadequate and lazy and generally not good enough because I had trouble making friends, communicating with family, making relationships at work, holding down a job for more than 2 years... Then I got diagnosed with avoidant personality disorder, and everything flipped! I’m not lazy, I’m not a horrid friend, I’m not incapable of living and taking care of myself. If ANYTHING, the fact that I HAVE held any job at all, let alone for two years (working on my third year of my current job, which does not involve any coworkers :)) is testament to how well I’ve learned to cope with my disorder - many others who have it can’t work or have friends or even go outside at ALL! The perspective a diagnosis gives is so wonderful :)

YES, my husband can definitely relate. He has a whole bundle of health issues, and doctors kept saying tests came back normal. Recently someone noticed his vitamin D was low, so he took a bunch and that has made a huge difference in his energy levels. Many people have told him he doesn't need a wheelchair, but prevention is important. Thank you for this video!

This is so true. You truly have to plan every single next step, physically and figuratively. And the disbelief you encounter. I thought do I have to paint dark circles under my eyes and wear bandana to look like a cancer patient to be respected and taken seriously? Cancer patients can recover. We don’t. I gave up the guilt and shame and all the people who didn’t believe me. Love to you all❤

(You look so fierce with that jacket and hairstyle) Yes! The whole thing was fantastic, but I especially liked the bit about giving yourself permission to use accommodations or to not do something even if you look able in that moment. My knees dislocate easily, and I can have trouble walking for anywhere from hours to weeks afterwards. After a dislocation, if I'm using a cane or crutches, I feel a lot less shame about walking more slowly or using an elevator than I do when I'm not using a device, even though doing those things could also help prevent another dislocation.

As someone who grew up with chronic pain that was always waved off as "childhood growing pains" that turned into more severe chronic pain mixed with dizziness, loss of feeling in my limbs, and occasional inability to use my limbs, this was something I really needed to hear. It's especially something I needed now, when the symptoms are more minimal. I feel like crap anytime I can't make it through a work day or want to use the handicapped stall in the bathroom, just because I'm not on the verge of falling over all the time anymore. We've never been able to get an answer as to why my body always hurts and it makes it even harder to defend myself when someone criticizes me for doing things I need to be able to get through the day.

I have Generalized Anxiety Disorder, had for years, and it was such a relief to know that there was a reason with a name that I was struggling so hard to do basic things.

I saw this video before, but yt suggested it again, and now I'm crying. I needed to hear the bit about it being okay to use accommodations to prevent making things worse. And I'm so overtired from a doc visit yesterday.

To me, I defined guilt as feeling bad for what you have done, and shame is feeling bad for who you are.

This video made me cry, in a good way. Jessica, when you talked about what we all deserve I just started crying. I went for 18 years without a diagnosis, got one, and now find myself with another set of problems and no diagnosis again. You reminded me that it took me 18 years to get my first diagnosis and hopefully it won’t take me 18 years to get my next one. Thank you for building such a beautiful and supportive community.

Brene Brown defines guilt as "I did something wrong" and shame as "there's something wrong with me/I am something wrong). Her books on those feelings are pretty good I think, her TED Talk as well. Not that I think you personally need what she teaches, but it's always nice to know, to me :)

It's incredible how you're able to be such a positive outlook on everything and be silly and have fun despite all you've been through. To be fair though, as someone with undiagnosed chronic pain myself, sometimes you have to be lighthearted and silly when talking about your disability because if you don't laugh, you will cry and have a mental breakdown and that's way more awkward in front of people than laughing about the fact that you may never walk again. So, while you kind of have to stay positive, it is still a very difficult thing to do and seems like you are truly able to enjoy life, which is absolutely wonderful and I am so happy for you! It proves that your attitude defines your quality of life, not your circumstances.

i relate so much!!! I have ADHD so my room is a mess and like i am able bodied for the most part (a bit of a fatigue and bowel as well as nerve issue but they dont affect me much) so its like not hard to keep my room clean but with executive dysfunctioning it is! and I am still so ashamed. Now, after 22 year of not being able to, I at least can put a name to it which makes it easier but I still a so ashamed of the mess of my room...

Jessica you are amazing I went through a mystery illness in high school that made it impossible to stand for more than an hour, I was fainting , I lost 20 lbs without trying and was consistently ill and no diagnosis was ever found, I felt some shame and like I was a lazy person because there wasn’t a reason for my illness. You filming on the floor, taking the time you need, and persevering gives me hope that if i ever get sick again I can get through it as well

It doesn't matter how big or small you contribution is to your community. What matters is the meaning behind your actions; and your unique position to brighten someone's day. Hugs, doing the dishes, and volunteering for a massive project all mean something to someone. We all need to appreciate everything that people do for us everyday. Paid or unpaid.

Just came back from yet another hospital appointment where the general consensus was "your tests came back normal" - after three years of struggle I needed this video today

I have a lot of thoughts. From the superficial wondering about your hair and watching Tilly, to the wondering why you didn’t talk more about your thoughts pre diagnosis (and then realizing you have addressed this elsewhere), and then settling on wondering how I judge people without a diagnosis? I know I’m hard on myself and I even get stressed about the process of getting care and diagnosis for what I consider routine things. I also worry about being a hypochondriac or a bother-this line of thinking doesn’t help anyone, but it is pervasive!! Thank you always for all that you do! It is so valid, from snugs to educating.

I recently moved back in with family because my mental and physical chronic illnesses had gotten so in the way of me taking care of myself and my responsibilities. My family is somewhat supportive, but have no understanding of how limiting the things I face can be, or how hard I'm trying each and every day even if it doesn't look like much. Your content does so much to help me feel validated and less alone. Thank you for doing what you do, and especially for keeping such an intersectional view of things. You're helping so many people in so many ways.

Thank you for making this. I went 14 years with endometriosis before getting diagnosed and treated this summer. Now that the physical recovery is wrapped up, I'm just now getting to the psychological recovery from not being believed by doctors that I wasn't just exaggerating the effects of a normal period and not being believed by friends and family that I could be sick all time without a diagnosis. I wouldn't say I've gotten very far in forgiving the misdiagnoses and rolled eyes and accusations of melodrama. I still feel incredibly, inexplicably guilty about my health. I had a virus last week and couldn't stop apologizing to literally everyone to the point where I annoyed even myself. But thank you for helping me with the process of moving on. ♥️

Jessica ! I have never admired a human being like I admire you ! I discovered your channel yesterday and I can't hold myself to say " Thank you so much !" I have been struggling with a mental illness since my early childhood. I misdiagnosed many times and labeled as "mad, sick , lazy, weak and stupid" through all my education life. Even one of my previous therapist made fun of me. I had to drop out art school because I couldn't bear anymore.I feel the shame and guilt at the same time because..everybody thinks that I am lying, dramatizing and escaping from the responsibilities. I live in Turkey, where psychological disorders are not counted as " illness" here you should have something physical so as to be accepted with your disorder/disability. Long story short....I am grateful .Thank you so much. I wish you a happy life with your beautiful wife and all the people you love :)

I love your videos so much! The worst is when people want you to be so thrilled that your results are “normal” and there’s nothing wrong with you. Yes, there is something wrong with me that’s why I’m here

Even though I don’t have a disability, this video was incredibly helpful to me. I’ve been struggling with my mental health for the past year for no real good reason but I haven’t been able to convince myself I’m worthy of getting help yet. Feeling horrible for seemingly no reason is awful and I’m relieved I’m not the only one experiencing this, even if it is a different degree of suffering.

Thank you for defining guilt and shame this way especially for undiagnosed. I don't have health insurance and can not afford it even though the government says I can. So the guilt of even going to the doctor for anything is horrendous. The though of spending food budgeted money for any tests is horrendous too, even just the check ups... It makes it's own cycle of hopelessness too. Have a great weekend.

I needed this: I have struggled for years (my whole life?) to get a diagnosis but most people think "I look too healthy"to be experiencing what I'm telling them is happening or if I only lose weight and exercise everything will be fixed! I finally found a physician a couple years ago that actually listens and it's been such a relief but I find with each answer there seems to be more questions.

Thank you for this video. I don't have any kind of disabilty, but during my fourth year of university I started suffering from hypothyroidism (basically, half of my thyroid is missing), which isn't a severe illness, but without medication made me feel constantly tired, always a bit feverish and, most importantly for me, made me almost incapable of paying attention to lectures. I literally fell asleep in class. Before I got diagnosed, I felt like I was just being lazy. It's just a small thing, but I understand what you are talking about: in my case, I felt guilty (and not ashamed), I thought I just lost interest in studying because of laziness. I take this opportunity to tell you that watching your and Claudia's videos helped me a ton while I was writing my thesis (another task that seemed impossible for me): you have such a calming way of speaking about any topic and your family is so welcoming, I felt like I was with friends all the time. Moreover, listening to you is sensibly improving my pronunciation: I'm Italian and I'm trying to learn to speak English fluently. Thank you so much!

Thank you for putting this feeling into words. And I'd like to add, You don't owe anyone an explanation for how you feel or how your body is behaving! A lot of the guilt comes from feeling like you need to justify yourself to anyone who looks at you funny, when really you don't. Remember to always put your needs first.

You wonderful, wonderful woman. It's like you're in my head saying everything I have a hard time articulating!

Oh my gosh I hope my hair comes back (lost much of it due to meds that I once used to try and control my chronic illness), because I want to do my hair like yours! Absolutely stunning! And also I am not just superficial - you make such amazing content and wanted to thank you for it. I am having a flare-up this week and your videos are helping me get through it. Watching your videos is such a comfort. Thank you for being such a positive influence.

Thank you for a wonderful video, I have ME/CFS and Fibromyalgia, I was first ill in school, where they thought I was just school-phobic. It took ages to diagnose me and it was sooo hard! 20 years on and I'm still struggling to fully be me as my illnesses fluctuate. The hardest thing for me is thinking I am waiting my life away, I have filled my life with stuff and clutter that I never seem to get to the end of sorting, and I've spent many more hours in my bed that anyone should. You are spot on with the guilt and the shame, and I feel this video should be watched by many more non sufferers so they can see inside us and how we are more than a disability they can't be bothered to learn about x

Thank you for this video. I was diagnosed last year with learning disabilities I never knew I had, and while your video is more geared towards those with physical disabilities, I still understand the feelings of guilt and shame that disabilities can give you. I feel guilty when I try and do things that I know help me function, but I also feel guilty when I'm not as productive as I would like to be because of some of the effects my disabilities have on me. It's really a double edged sword, but your video has helped me realize that I shouldn't feel guilty for just being me and doing the best I can. I really feel like I'm my own worst enemy sometimes and I need to put that aside.

Awww I loved this one... I struggle with both guilt and shame and you're right, we don't need to carry it around.

I really needed this right now. Thank you, Jessica. I am living without a diagnosis, but, I just found out today that I am finally getting my powerchair, next Thursday. I feel a lot of guilt and shame, because, I'm "too young to be sick" (I'm 23). I can't care for myself anymore. Even bathing and cooking is almost impossible for me most days. I live alone without support of family or friends and that's not helpful, either. It's not just that I have to ask for help.... none exists. It's a great life. ^^; At least I've got my computer, my TV, and my e-books. ^^; Fictional friends are cool, but, I miss real ones.... or just visitors in general. ^^; I even feel guilty for my loneliness from my isolation, because, I am "too young for that, too". ^^; I use this face "^^;" most of the time if that tells you. It's second nature to feel guilty about this stuff constantly, even though I know I shouldn't. P.S. I get the feeling of being a girl that stepped out of a worm hole from the 1940's. I love vintage things, antiques, etc. I am jealous of you clothes, hair, voice. All of it. ^^; I rarely envy other people's looks, but.... I'm very jealous. ^^;

This is such a helpful video. Years ago, when I was around 13-14 years old, I started becoming sick. My feet hurt a lot, and it got only worse. All my activities slowly stopped, and I had to pay a price of pain for every outing I did. When I got home from school I could hardly even walk, and the lenght of time I could stand got shorter. Making a dish for 30 minutes was impossible, as I hardly could stand for 10. But the worst part, was my experience with the doctors. At first they were genuienely checking me and looking for whatever caused me so much pain. I tried everything they gave me, did any tests. But as the list of my visits became so long, they simply concluded that I was sick in the head. It felt hostile when I went to the doctors. I fell behind of schoolwork, neglected my friends, could not tell any of them of how much pain I was in because the doctors basicly said to me that it was my head that was at fault. The doctors even said that I should fake something or hurt myself because then I would actually be hurt and have a reason to go there. It got so far, that even the diagnosis that I had (unrelated illness) they didn't acknowledge and simply gave me pills to sleep better instead of stronger meds. At the time, there was so much shame put on me that it finally got to my head. I didn't want to live. And I was hardly 15 years old. Then, my illness exploded. I was diagnosed with rheumatism, more accurately psoriasis artrit. Now it was not a question if I was sick or not, but rather if I even was going to survive. My rapid decline in health was really alarming. But when I found out of my illness, it felt like I finally knowed about myself. What was explained to be lazy behavior in my childhood, was now explained by that I was in pain. That I didn't run around in the snow was not because I was lazy, but because I was in pain and wanted to sit down. My illness certainly did not start at 13, but have been with me the whole life, but even a slight notion of an unexplained pain or feeling different from any other was really shameful. The young me understanding the concept of shame, just accepted my everyday life not thinking that something was actually wrong. I do not blame the doctors for not finding my illness earlier because it is very hard, but rather that they did not take me seriously. Each time I went they just checked the last journal entry where it said that I was an psychopat of a kind, and pretended to check me up to then dismiss me. Maybe if they didn't dismiss the posibility of an illness, I would not have to face so much of the pain I bear today. I think your video explained a lot of how shame is viewed, and I guess my story relates a lot to how the doctors did not trust me and put shame on me and also how I was afraid to even be put to shame that I was afraid to share it. When my sports teacher found out and I had not a diagnosis, he simply said to me that it did not matter if I had a diagnosis or not but how I felt. I had already put guilt on me for not having proof. I wish that people would stop with the hierarchy and just look at one another accepting each others pains without some sort of rank. Just look at each other like humans.

I feel so much shame when people ask what I do, and I say "I'm 46 and I live with my parents and I haven't had a job in 6 years now." I'm also so frustrated that I don't have a diagnosis, and most doctors don't seem interested in finding one. I've been having fatigue and muscle pain for at least 15 years now, probably closer to 20, and most doctors I've seen have just said, "You're fat and lazy." I did finally find one good doctor who spent about 5 years sending me to every specialist known to man, but none of those specialists came up with anything. And I do have one diagnosis, which is Chronic Myelogenous Leukemia, but the problem is that it doesn't explain my symptoms. Some doctors, when they don't flat out say I'm fat and lazy, say that my symptoms must be caused by my CML, so they don't look any further. But then my oncologist (who ought to know) says that CML in remission doesn't cause fatigue and muscle pain. So I'm sort of stuck between finger-pointing doctors. And one time, I tried to get into the Mayo Clinic, but they told me they don't accept people with undiagnosed pain. (I mean, the diagnosis is the hard part, so if the Mayo Clinic doesn't diagnose people, they're really not that impressive.)