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

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Jessica Kellgren-Fozard

Jessica Kellgren-Fozard

5 жыл бұрын

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Пікірлер: 810
@LiquidCake
@LiquidCake 5 жыл бұрын
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.
@ihatemickiegee
@ihatemickiegee 4 жыл бұрын
yes! before you get bad is almost the most ideal option if you have it. alongside it helping get a head start on preventing more dangerous points, it is about doing that initial work while you still have the energy - mental & physical obv but specifically, the existential energy, _which I define as the motivation to live purposefully. I say from raw experience how that that affects the desire and ability to get help almost as much as mental illness affects my happiness + personal potential - b/c you start to feel like it's meaningless or that it won't work. sooner the better for everyone. I know this comment is a yr old so I wish you the best and hope you're doin okay. mad love
@rosehill9537
@rosehill9537 4 жыл бұрын
Yes! I agree get help. If its effecting u it matters. Much love to u sweety
@C-SD
@C-SD 3 жыл бұрын
Thing is that if you wait til you can't function at all, it takes forever to dig yourself back out of the hole-if you even can. Your whole life shouldn't have to go to s*** before you get some help. Also takes less upkeep if you catch it early. Mental health issues can eat at you like cancer and there are parts of you that you won't necessarily be able to bring back.
@zoelawrence568
@zoelawrence568 2 жыл бұрын
Honestly "if you're hurting" shouldn't even be the metric. "If it's helpful" should be the metric
@MoviesMoveMe
@MoviesMoveMe 2 жыл бұрын
Yeeesss it is!!! "Getting help BEFORE you get that bad", yes!!! Think of any "obvious" ailments, like cancer or a fractured bone, you don't wait til it's BAD to get it treated, you treat it as soon as you know about it and try to keep it from ever getting bad. I'm glad you know that, may you always remember that LiquidCake!!! Take care of you!!!!
@amorgan4984
@amorgan4984 5 жыл бұрын
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
@silverbroom02
@silverbroom02 5 жыл бұрын
A Morgan I agree. I think they think “sick” as having a cold or flu and of course when you’re acutely sick, you’re more likely to hang out in sweats for a few days feeling sorry for yourself. But when being sick is not contagious and continues on indefinitely, you often have to adapt to your life in a whole different way.
@camillastacey4674
@camillastacey4674 5 жыл бұрын
Oh my god this is so true! When I went for my PIP assessment they recorded me as being very 'kempt', when I saw my psychiatrist shortly after I was recorded as being very unkempt- nothing had changed. Somedays I can't dress myself at all/sleep in my clothes for a week, other times I can look pretty swanky.
@johnk3606
@johnk3606 5 жыл бұрын
Yes! It does confuse them at least in my experience. If I get to go out the worse I feel the better I will dress and that always confuses people. I think I am just afraid of catching myself in a mirror somewhere and looking as bad as I feel. Either way dress for yourself, there is always a hater out there that will never be worth an infinitesimal amount of your energy or attention. Not even someone who is disabled. They don't know your situation therefore their opinion doesn't count either.
@beckybaker703
@beckybaker703 5 жыл бұрын
True! I once had a doctor write in her notes that I "cheerfully spoke about my diagnosis" and that I "didn't act sick" which still makes my blood boil
@BeauMeztli
@BeauMeztli 5 жыл бұрын
This! Yeah! It's unfair that they expect us to look I don't even know how! It's like we have to constantly provide proof
@1015SaturdayNight
@1015SaturdayNight 5 жыл бұрын
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...
@foxiclo
@foxiclo 5 жыл бұрын
I actually know people who do this. The thing is, I think it comes from a good place; they think they are helping disabled people by making sure people who are able-bodied aren't taking those spaces when they don't need them. The issue is that they think the spaces are for wheelchair users only, so if they see someone walk from the car (especially without a mobility aid) they are outraged. As I said, I think they mean well, but just don't know very much about invisible disabilities and why anyone other than wheelchair users need those spaces.
@katiepie3009
@katiepie3009 5 жыл бұрын
The only people I even give a thought to in handicap spaces are the ones that don’t have the permission. No tag, nothing on their plate. I’ve never confronted anyone though. I’ll let the authorities deal with those people. I know that people have “invisible “ diseases/conditions that are none of my business, so I’m not going to make people prove they are allowed to park there.
@OverdramaticAngel
@OverdramaticAngel 5 жыл бұрын
@@foxiclo Their good intent doesn't really matter. They are harassing innocent people, making people afraid to even use the tools they need to be able to function. I know a lot of other people with invisible illnesses who are actually afraid to even go out in public now. This is 2018. People are absolutely aware invisibility illnesses are real but they don't actually _believe_ they're real.
@ecologist_to_be
@ecologist_to_be 5 жыл бұрын
That also happens in UK!
@1015SaturdayNight
@1015SaturdayNight 5 жыл бұрын
Star Hunter I am legally disabled in the US and won't even send off for a placard :-/
@juniper617
@juniper617 5 жыл бұрын
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. :-(
@amorgan4984
@amorgan4984 5 жыл бұрын
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.
@andreabortolotto8996
@andreabortolotto8996 5 жыл бұрын
This!! I have an autoimmune disease and while the antibodies attacking my thyroid showed up on my blood panels, my body's need for more of a particular thyroid hormone didn't show up. I barely scraped through life for a few years.
@saraquill
@saraquill 5 жыл бұрын
There was one neurologist who saw video footage of me seizing, in addition to my seizing in his office. His diagnosis? It's all in my head. @#$%!
@naseerahvj
@naseerahvj 5 жыл бұрын
How did I not know that about ANA as an MLS....
@CaseyLouise149
@CaseyLouise149 5 жыл бұрын
I have 2 autoimmune diseases, an eye disease, half my thyroid was removed causing hypothyroidism, I have IBS and a few other unexplained symptoms. My first diagnosis only occurred after I insisted on blood tests at 21 when everything I ate was causing me severe pain. The doctors first words to me when the results came through were 'It's not all in your head!' and I just sat there going no sh*t sherlock. Since then I face many many doctors who doubt my diagnosis because having these things together is apparently rare. As if I can't be trusted to know my own medical history. Don't you just love invisible illness.
@wittypseudx6839
@wittypseudx6839 5 жыл бұрын
oh my god its true. i went to my GP because of this horrid pain i have, he felt my back and every point he felt was inflamed. he sent me to a neurologist. the neuro didnt even feel my back. he just read i have pain and i have OCD. he tapped my legs, and they jumped just fine! so he told me i have nothing wrong and its all in my head and i need to tell myself im not in pain because i read something and now i think i have it. because i have a mental health condition. (and maybe because im female and hes male). so he called for bloodwork and a neck mri (which made no sense because its my hips) and he said "now these will all turn up clean because as i said there is NOTHING wrong with you, but we do this just because we have to. but when you come back it'll be all clear and so we'll work with your psychologist to get this pain all cleared up." well jokes on him because i have signs of an autoimmune issue and im going to a rheumatologist, and i have anemia where my red blood cells are too small and there arent enough of them. edit: not to mention a couple months ago i FINALLY after 10 years got a diagnosis of IBS. its not exactly a big deal but it just feels so good that i can tell people im not making myself take forever to go to the bathroom, its an actual issue and for so long none of my doctors or family took me seriously, despite crohn's disease running rampant in my family
@Nightingale_time
@Nightingale_time 5 жыл бұрын
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.
@OverdramaticAngel
@OverdramaticAngel 5 жыл бұрын
We don't have the NHS system in the U.S but if you're disabled you get Medicare, insurance, for free, paid for by taxpayers. And I have had doctors refuse to run tests after seeing my insurance because, and I quote, "I won't let you waste my money." That's not something anyone should ever say.
@Nightingale_time
@Nightingale_time 5 жыл бұрын
@@OverdramaticAngel I'm actually American, my fiance is English. I'm pretty sure that's illegal. Certainly against the Hippocratic oath.
@OverdramaticAngel
@OverdramaticAngel 5 жыл бұрын
@@Nightingale_time Doctors don't actually take the Hippocratic oath anymore, but yeah, it certainly violates the entire reason of being a doctor- to help people.
@Astridologist
@Astridologist 5 жыл бұрын
irockleftsocks13405 I may come across as really ignorant as I don’t know much about the NHS but it reminds me a lot of how it is here in Canada. You’d never go to a doctor here and have someone say you were “wasting” resources because we see healthcare as a right and not a privilege so we don’t make you feel guilty for “using” anything when it’s just as much yours as it is anyone else’s. Of course there surely are doctors or nurses who have probably said terrible things about people wasting their time but 99% of the time I’ve never heard of anyone shaming you for seeing a doctor no matter the reason. I’ve never talked to someone who feels guilty for going to a doctor and it’s terrible that this is a thing that has to happen. The NHS seems like a great start for health care but it seems like it could use quite a bit of tweaking. I’m so sorry your fiancé had to experience that, nobody should ever be made to feel they don’t deserve healthcare because somebody may have it worse.
@nataliejane81
@nataliejane81 5 жыл бұрын
That's awful, I'm so sorry you had such a bad experience. I'm incredibly lucky that my GP is really supportive and regularly reassures me that I can always make an appointment if I need to but I STILL find it hard to ask for help until things get really bad. X
@isak7216
@isak7216 5 жыл бұрын
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!
@OverdramaticAngel
@OverdramaticAngel 5 жыл бұрын
It happens even more with women. It's been proven we're taken less seriously and our pain is taken less seriously. I can't believe this crap is still happening in 2018!
@nowitsclear
@nowitsclear 5 жыл бұрын
It is SOOO annoying. I went back every couple month to the doc because I was still unwell and the doc thought I was complaining. Then my health completely broke down... Surprise
@geekweek9673
@geekweek9673 4 жыл бұрын
One reason why I’m not seeking a diagnosis for my learning/mental disability is because last time I tried that, I got diagnosed with Conversion Disorder which is basically the modern name for hysteria, and I was diagnosed with this because when I had my first major Tic attack (and the first time I took notice to even having Tics) by the time I was in the hospital I had already gotten some control over it and it was calming down now that I was in a hospital where people could help me.
@bennyton2560
@bennyton2560 2 жыл бұрын
yo it happens with my ADHD! which is severely underdiagnosed for women as well
@GeeklingNo1
@GeeklingNo1 5 жыл бұрын
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’
@TheGeoJG
@TheGeoJG 5 жыл бұрын
Normal'sWayOverrated When my doc told me I had FM I was mad. I said please don't put that in my med record. I have IBS too & anxiety/depression & facet arthritis in my lumbar region of my back. None of these are visible so I know people think I'm full of it.
@annarehbinder7540
@annarehbinder7540 5 жыл бұрын
Normal'sWayOverrated fibromyalgia has Now been shown to be a inflammation in the spinalfluid and also a lot more painreceptors than normal people and less signalsubstances so def NOT a blanket diagnosis but still a diagnoses which not all doctors believe so get one who does believe
@johnk3606
@johnk3606 5 жыл бұрын
Normal'sWayOverrated I know it's maddening but it does fall to us to educate those around us about our invisible illnesses and I encourage you to try to do so. Fibromyalgia as you know can be devastating and you deserve to be believed. Find a KZfaq video from someone with Fibro who is as ill as you are make your dad watch it with you. Print off some research into the effect of Fibro on pain and give it to him to read. Do the same with your close friends. My mom finally got it along with my other family and a few of my friends(over time). I have ME/CFS and this helped my family to understand, some friends too. The ones who really care about me anyway. I hope it works for you too.
@annarehbinder7540
@annarehbinder7540 5 жыл бұрын
Ps i have fibromyalgia and psoriatic athrities those two disease often go hand in hand read up on that - that doesnt show on the reumatic tests
@CaptZerp
@CaptZerp 5 жыл бұрын
This is exactly where I'm at despite showing symptoms of both POTS and EDS
@mandypandy111ify
@mandypandy111ify 5 жыл бұрын
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.
@rhi963
@rhi963 10 ай бұрын
youre so valid! your brain is a physical real body part and organ that has real problems just like any other bodily system, those problems can be just as debilatating as a visible illness or disability. I also deal with those conditions and it isnt YOU its your brain and the depression and anxiety and flashbacks and everything that comes with us being on the spectrun happens TO us, its a very real set of symptoms and experiences we cant control and it is intense and visceral and affects our activities of daily living, we have a harder time needing to advocate more for ourselves and communicate our needs and experiences because no one can see how much we are struggling with real painful physical symptoms. mental illness IS a physical one, your brain IS your body and its issues are just as valid as the rest
@SuperPooped
@SuperPooped 5 жыл бұрын
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!
@kimberly_erin
@kimberly_erin 5 жыл бұрын
Someone tried to jokingly steer me via my walker one day, someone I was very close too... on that particular day I was having a lot of difficulty with mobility. I actually started crying and had to explain that it’s not funny or fun because I don’t have control. Your dream reminds me of that. It’s really upsetting and scary to not have control. Soft hugs
@1015SaturdayNight
@1015SaturdayNight 5 жыл бұрын
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
@alistercat
@alistercat 5 жыл бұрын
I'm hoping for that concrete diagnosis. I had the fibro diagnosis for 2 years before getting the "undifferentiated connective tissue disorder" one. I'm still at that stage. My pain is very poorly managed and I keep breaking things due to my grip giving out. I just keep getting worse every few months and can't sleep from how bad the pain is in my upper spine especially. I struggle to eat sometimes from the nausea that same upper spine and neck pain brings. I can't go to Walmart and go around the whole store, even with my cane, anymore. I also can't get myself up off the floor sometimes if I end up there...I'm really looking forward to a day when tests show something they can help with.
@OverdramaticAngel
@OverdramaticAngel 5 жыл бұрын
@@alistercat This is something I learned the hard way- always get copies of both tests run and written records. I've had many, many, MANY doctors tell me my tests are fine but when I went back, they were not. They come with the value range right next to the numbers and will have an H (high) or L (low) if they're off. I've also had doctors tell me "It's fine, it's just a little bit outside the range." If it's outside the range, it's not fine. And sometimes, even if something is within the range, it should ideally be in a certain spot- which can be a different spot depending on which test it is, so that's a bit trickier.
@moonflower7616
@moonflower7616 5 жыл бұрын
Well done for not giving up you are a strong woman.
@aoifemaireadniconchubhair5126
@aoifemaireadniconchubhair5126 4 жыл бұрын
Stuck in this world too 😭 I have an amazing PCP who suspects Lupus or Sjogrens but a shitty rheumatologist who won't move me out of the UCTD world and therefore won't treat me 😑 I can't help but shake a huge feeling of guilt though because I've had dozens of rheumatology tests done and many of them were negative or only borderline positive, and many people don't even get these tests run, so I'm constantly worried that I'm making everything up, but I just feel so awful and like I'm constantly deteriorating. Really shakes your whole foundation and trust in the medical system when your body is screaming that something is wrong but the tests tell you you're fine.
@heatherjones4034
@heatherjones4034 3 жыл бұрын
62 yrs now. Blessed be.
@niclastname9123
@niclastname9123 5 жыл бұрын
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 💖
@beckybaker703
@beckybaker703 5 жыл бұрын
Do it! Use that cane with pride (no pun intended, I swear!) And if someone gives you grief about it, give them a good whack with your cane :)
@niclastname9123
@niclastname9123 5 жыл бұрын
Becky Baker thank you ^~^ I will!
@missmatch9058
@missmatch9058 5 жыл бұрын
Canes are great! Go have fun! 👏👏👏🙌
@marjoriethompson3790
@marjoriethompson3790 5 жыл бұрын
Yay! Have fun and be proud of taking care of yourself.
@spooniejusticewarrior
@spooniejusticewarrior 4 жыл бұрын
I was self conscious about using my cane at first. Now i use it sometimes even if i don't necessarily need it that day so that i have visibility to my disability so when my pain starts to get bad, i don't feel as much shame asking for assistance or accomodation in public.
@theannieelainey
@theannieelainey 5 жыл бұрын
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!
@jessicaoutofthecloset
@jessicaoutofthecloset 5 жыл бұрын
Thank you dear! 🤗🤗
@klavlock
@klavlock 5 жыл бұрын
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
@MWeirdman
@MWeirdman 5 жыл бұрын
Girl do a tutorial on this haaaaair
@buttonsphoenix102307
@buttonsphoenix102307 5 жыл бұрын
Yes please...
@zyzxzsgedr
@zyzxzsgedr 5 жыл бұрын
Yess!
@smh1072
@smh1072 5 жыл бұрын
Hellgirl 666 ; oh yes please
@5amisntlate
@5amisntlate 5 жыл бұрын
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.
@saintnikz
@saintnikz 5 жыл бұрын
That's a really insightful thought. I wholeheartedly relate to what you said about thinking health issues and symptoms you had were just normal people things. It took me so long to even make myself go see a doctor because I thought I was being too sensitive, that being in some form of pain constantly is just part of life. I'm 24 now and it makes me sad to think I spent so long wondering why I wasnt like everyone else, and trying to "tough it out", that i lost time that could have been used getting medical treatment and figuring out what's wrong, and actually living my life. Thank you for the reminder of how important it is to actively work on letting go of that kind of guilt.
@becca413b
@becca413b 5 жыл бұрын
Agree totally. There's a difference between not doing something because you feel like being lazy or because it or the consequences are overwhelming. Some days I choose not to get dressed because I want to chill out and watch a film and some days I can't get dressed because it takes hours to recover from going to the toilet. The difference is choice.
@RainbowNomja13
@RainbowNomja13 5 жыл бұрын
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.
@ANTONIACOOLL
@ANTONIACOOLL 5 жыл бұрын
Geez this is awful. I also have sleep problems and every day I wake up tired as if I hadn't sleep at all. My mom died a few months ago so an uncle is taking care of me, and he just calls me names all day telling me I'm lazy. I told the doctor to allow me to take a sleep apnea test but he refused to because I'm not fat. Sometimes I do wake up with the sensation of choking which is a symptom of it but no one is concerned about this except me. I wish I didn't have crippling anxiety so I could take care of myself and seek what's best for me.
@biancasantiago2958
@biancasantiago2958 4 жыл бұрын
@@ANTONIACOOLL please persist getting treatment can be SO hard but you must push through
@maddynicolelee
@maddynicolelee 5 жыл бұрын
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.
@kimberly_erin
@kimberly_erin 5 жыл бұрын
Madison Lee don’t give up. 💪
@saintnikz
@saintnikz 5 жыл бұрын
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
@yellowsparklefish337
@yellowsparklefish337 5 жыл бұрын
For the first time since i got sick i really feel like i can relate to another human being.. thank you for your comment ❤️
@saintnikz
@saintnikz 5 жыл бұрын
If you ever need to talk to someone who gets it, I'm always here. Usually in bed in a dark room with ice on my whole body ;)
@BeauMeztli
@BeauMeztli 5 жыл бұрын
Same here! I heard there's going to be a class reunion and I immediately thought I wouldn't go to that and show how the "most promising student" has done nothing with her life
@SpoonieScully
@SpoonieScully 5 жыл бұрын
Niki I feel the exact same way! I’m 18 and I keep running into people from school and they’re trying to tell me places that are hiring and it’s so tiring having to explain my disabilities to able bodied people my age and I understand they’re trying to help but I get so tired of it that I just say thank you and end the conversation because it upsets me that I can’t work the same as them.
@CatCaffeine
@CatCaffeine 5 жыл бұрын
this, so much this
@Napukettu
@Napukettu 5 жыл бұрын
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.
@Napukettu
@Napukettu 5 жыл бұрын
But yeah, the less visible the problem is, the more like a fraud I feel because people around me expect me to be able to perform to the usual standards. Worse even, when I try not to show I'm having trouble, people won't see what I'm having trouble so they don't understand why I'm not able to do everything. If I then let people know I have a problem, I'm perceived as complaining or making a big deal about something minor because it's not something I can show physically like a broken leg or something. People have to rely on my word when I say I can't do something or I'm in pain. I sometimes wish I could just have some sort of a card, badge or a device or something that I could just show to prove how it feels.
@Napukettu
@Napukettu 5 жыл бұрын
I don't think most people (or at least if you haven't had anything like that in your life) understand the fear or anxiety that some of these conditions or severe pain with poor pain management can cause. I mean, I might be doing just fine at present, but I will sure as hell try to avoid any situations that might trigger the migraine or PVCs. Sure, there may be a pretty reasonable chance I won't get anything, but if the possibility is there I will weigh very carefully if it's worth it. Err on the side of caution in most situations. I fear it may seem too cautious to some or cause misunderstandings like "she's making excuses because she doesn't want to do this". :(
@OverdramaticAngel
@OverdramaticAngel 5 жыл бұрын
Mine was in my head... just not in the way the doctors said. It was actually a brain tumor.
@marionjones2105
@marionjones2105 5 жыл бұрын
Very sorry to learn that.
@wittypseudx6839
@wittypseudx6839 5 жыл бұрын
OH MY GOD SAME i have OCD and depression and i've been told (basically) that i'm a hypochondriac and im not feeling real pain and i just need to get over it, silly girl, you're fine. well jokes on you because my blood tests came back abnormal, son
@silverbroom02
@silverbroom02 5 жыл бұрын
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.
@moordt
@moordt 5 жыл бұрын
Amy McRae Yes! That giving yourself permission part. That is so true. I get tears in my eyes writing now. Always a sign of something hitting home. So thank you. I’m going to pay attention to permitting myself whatever it is I need to feel better.
@TheJacOfHearts
@TheJacOfHearts 5 жыл бұрын
That HAIRRRRR
@abigailwilkinson1398
@abigailwilkinson1398 5 жыл бұрын
Is that a good or bad thing 😂
@santinistar
@santinistar 5 жыл бұрын
@@abigailwilkinson1398 Good! Her hairdo looks amazing 😍 Very well balanced - looks soft and supple, yet is styled perfectly 👏✨
@abigailwilkinson1398
@abigailwilkinson1398 5 жыл бұрын
@@santinistar yh ik I love it just wasn't sure if they were hating
@fictionalhuman
@fictionalhuman 5 жыл бұрын
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!)
@WateryStar
@WateryStar 5 жыл бұрын
I hope you find the answers your looking for.
@beckybaker703
@beckybaker703 5 жыл бұрын
It's such a disheartening, frustrating thing to go through :( We believe you! Keep searching!
@fictionalhuman
@fictionalhuman 5 жыл бұрын
@Watery Star @BeckyBaker thank you for your kind words and positivity 💓
@victoriapyles7752
@victoriapyles7752 5 жыл бұрын
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.
@camillastacey4674
@camillastacey4674 5 жыл бұрын
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.
@CazAvery
@CazAvery 5 жыл бұрын
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.
@elizabethr5
@elizabethr5 5 жыл бұрын
Caz Avery i’m in sixth form now and feel like i’m in the exact same situation you were in. i sleep for 14 hours a night and find it almost impossible to wake up even with around 15 alarms, and i’m still exhausted after those 14 hours and can’t exercise because my body is achey and weak. i have always been an “able” student and did well without trying too much but now i am working as much as my body can handle and am failing everything. it feels weirdly nice to be able to relate and even nicer to see that you got a diagnosis and the treatment needed :)
@CazAvery
@CazAvery 5 жыл бұрын
@@elizabethr5 Good luck with everything! I remember how it all felt but I promise if will get easier eventually, don't worry if it means you take a little longer than everyone else either. I thought my world was ending when it was suggested I repeat year 12 (in the end I didn't have to, but honestly if I had I realise now it really wouldn't have been as bad as I imagined). And if you're not sure what is going on yet, make sure you ask your doctors to check your vitamin B12 levels!
@elizabethr5
@elizabethr5 5 жыл бұрын
Caz Avery thank you !! will do!
@wittypseudx6839
@wittypseudx6839 5 жыл бұрын
i hope you don't mind me asking, but i am 16 right now and i have blood tests showing inflammation, anemia, slightly elevated white blood cells, and tons of pain. they are sending me to a rheumatologist because it looks like they could deal with it. it may be an autoimmune issue. did this start when you were 16? because it started for me a month ago, and i was 16 then. what is the condition too, if it isn't too personal? maybe i could ask my doctor about testing for it to rule it out, and maybe it'll rule it out or show its there (because i had to push to get checked for anything in the first place, i was told its all in my head and im a hypochondriac because i have OCD and IBS which doesnt really show on tests so clearly i make everything up bc i have a mental disorder) edit: you mentioned b12 levels, and its known i have pretty low b12 and D vitamin levels. is that relating to your condition?
@CazAvery
@CazAvery 5 жыл бұрын
​@@wittypseudx6839 I don't mind you asking, but I don't think I will be much help, sorry! I have 'Pernicious Anaemia' - my body attacks my stomach and stops it producing the stuff it needs to absorb the vitamin B12 from food, so no matter how much of it I eat it does nothing. I need to have it injected every 2-3 months otherwise my symptoms (extreme fatigue, pins and needles/nerve problems, brain fog etc) return. It is likely that I stopped absorbing B12 when I was about 12/13 and the symptoms didn't show up until I was 15-17 (progressively getting worse). Definitely keep an eye on your B12 levels - it can be related to diet so make sure you're either eating enough food with B12 in or taking supplements (B12 is not found in a vegan diet outside of supplements so any vegans reading this - take your supplements!). But overall I think what you're experiencing is different. Well done you for pushing for the tests. Sorry I couldn't be more help. I hope the rheumatologists help you figure out what is going on and that you can find a treatment/management plan that works for you.
@feefee221100
@feefee221100 5 жыл бұрын
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! ❤️
@Helena-rn4th
@Helena-rn4th 5 жыл бұрын
Oh dear, you look gorgeous!! I love your hair😍 Could you do a tutorial on This?
@maidenrohina
@maidenrohina 5 жыл бұрын
I think she's already done one on this hairstyle, from memory I think its her 1950's bridesmaid crown of curls video.
@NekoArts
@NekoArts 5 жыл бұрын
I was just about to say the same thing. I'm inlove with the hair.
@RodneyAndMeVideos
@RodneyAndMeVideos 5 жыл бұрын
Jessica looks particularly stunning this video!
@stuntcellist3338
@stuntcellist3338 Жыл бұрын
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.
@meganf1658
@meganf1658 Жыл бұрын
My symptoms are reasonably consistent but that sounds so frustrating. If your friends and family know you they should know that you're a good person who wouldn't lie or exaggerate things like this, and if they don't believe you, well it doesn't make them look too good to be honest.. maybe you need to try and find people to surround yourself with who do believe you because it actually it seems a matter of respect too, don't you think? I don't think my friends and family believe me very much either, I think I try to downplay my disability though because I guess there's some shame there
@truecrimelover2022
@truecrimelover2022 5 жыл бұрын
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.
@elenachristian9860
@elenachristian9860 5 жыл бұрын
anna ramey you are doing beatifully.
@truecrimelover2022
@truecrimelover2022 5 жыл бұрын
@@elenachristian9860 thanks
@CassieWinter
@CassieWinter 3 жыл бұрын
The way you distinguish between guilt and shame is so powerful. Thank you.
@RadioJunkie04
@RadioJunkie04 5 жыл бұрын
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
@katieb9376
@katieb9376 5 жыл бұрын
Honestly thank you so much for this! I’m struggling with an undiagnosed chronic illness right now and it’s so hard
@KelRocks01
@KelRocks01 5 жыл бұрын
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.
@Napukettu
@Napukettu 5 жыл бұрын
Yeah, because disabilities in no way effect your ability to exercise or your metabolism. This is the thing that annoys me so so much. Even doctors often make you feel guilty over being overweight because it often exacerbates the problems, but damnit, what the hell can you do by yourself when it's one of the damn symptoms of your condition or a side effect to your meds... Argh. -_-
@Ilovetherush94
@Ilovetherush94 5 жыл бұрын
"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.
@OverdramaticAngel
@OverdramaticAngel 5 жыл бұрын
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.
@ravendangernavy3575
@ravendangernavy3575 5 жыл бұрын
I wish there was something I could do for you. I hope your mom is going to be okay.
@EveryDayALittleDeath
@EveryDayALittleDeath 5 жыл бұрын
I am so, so sorry about your situation. I know what you mean about the war on pain patients... My mother and I both suffer from an autoimmune disease that causes chronic pain, and my mom also has herniated discs in her back and it's so ridiculous that they are punishing legitimately ill people for the behavior of addicts. I suffer from mental illness as well, and in one treatment center I was in they wouldn't give me my primary pain meds because they claimed the addicts would be tempted to steal it, despite the fact that the pain med in question, ultram, is one of the safest and non-addictive painkillers there is. I wish I could help you in some way, as I understand where you're coming from and how much it sucks. My heart really goes out to you.
@OverdramaticAngel
@OverdramaticAngel 5 жыл бұрын
@@ThePedersenHomestead I do live in the U.S and she just turned 70 so she's going to try and fill out the paperwork that will get her retirement up, which should mean we could get her insurance paid for again. She can't die yet. If she died I'm all alone and I will just kill myself to be with her. We don't have anybody. We had a Church helping us but they have stopping talking to us and we don't know why. They were helping us with a car and everything was fine but theycame one day nd took it for "maintenance" and get new tabs nd never brought it back, gave back the stuff we had it in nd refuse to answer phone calls or emails. First it wqs just q couple people but now one person we really thought was our friend won't answer and it's been 2 months. I also had a tooth fall apart a couple days and I don't have a dentist to do go or how much it will cost It's the first time time something has happened to my teeth, I've always been ao proud of them. I'm sorry, I'm not writing very well but I had to takr a lot of medicine just to stop cryscreaming.
@notsosecretlyspiderman7895
@notsosecretlyspiderman7895 5 жыл бұрын
stay strong, i believe everything will work out for you and I am praying for you! Sending lots of love!!
@angelanice
@angelanice 4 жыл бұрын
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 ❤
@MSAKspain
@MSAKspain 5 жыл бұрын
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
@jamielandis4606
@jamielandis4606 4 жыл бұрын
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.
@paulbrown4850
@paulbrown4850 5 жыл бұрын
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
@tealcookies8967
@tealcookies8967 4 жыл бұрын
@AHalloweenSky
@AHalloweenSky 5 жыл бұрын
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!
@case3474
@case3474 5 жыл бұрын
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. :)
@kalimpoli5208
@kalimpoli5208 5 жыл бұрын
I got my diagnosis in summer after years of not being listened to and then exactly a year ago my right hand lost its strength, so finally doctors listened. Though I‘ve had symptoms for my whole life and just thought they would be normal, because nobody told me otherwise. But now most of my family and lots of friends still don’t understand what me being sick means, so they just do not accept it. To the point my granny tells me I should go out more, I‘m nothing if I stay home ...after a week of not being able to walk more than 20m at a time. I don’t really feel guilty anymore but the shame aspect is very high on me. Because I‘m told that it’s wrong and I should not cry so much about it, it can’t be that hard and painful 🤔 Has anyone an idea how I can make them understand? I already tried Spoon theory but it only helped with a few...
@kimberly_erin
@kimberly_erin 5 жыл бұрын
Some people can’t handle it. So they will never understand. But you could try bringing them in to a doctor appointment with you. That can sometimes help. The only think I know that works for ppl who can’t accept it is to always advocate for yourself. Don’t let those lack of understanding lead you to cause yourself harm. Get used to saying I can’t do that right now because it will effect me later. Do try to look for things you can do. Like reading a recipe for someone, or sitting near by and chatting. Show that you do want to be involved (when you are able)
@fresharche6227
@fresharche6227 5 жыл бұрын
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...
@mikelmontoya2965
@mikelmontoya2965 5 жыл бұрын
I relate so much with your comment. I have terrible executive dysfunctioning and have been told by a psychiatrist and a psychologist that I have autism last month (does that count as a diagnosis? I'm still not sure), which I already knew that I had since I was 16 (I'm now 19). I think it's likely I have ADHD too, since I'm completely unable to pay attention in class and as I've said have really bad executive dysfunctioning. My room is a complete mess too, and I don't know what to do with it. But my main concern right now is college, I failed every subject last year and I don't know how I'll manage this year since I'm still not getting the resources and help that I think I need for being able to pass. It's also the thing about which I feel the most shame, since, as a person with a high IQ, everybody has always told me that the reason I don't success academically is that I'm lazy, and I have interioriced that message a lot.
@fresharche6227
@fresharche6227 5 жыл бұрын
Yeeah cousin diagnosis! ADHD and ASD have huuuge overlap so I wouldnt be suprised if its both or if like the ASD covers the attention issue as well. Also like exactly. For me I can manage like one thing like if I have to focus on uni to survive that I cannot for my life keep my room clean or like actually have a well thought through diet or...work. I also am very intelligent and that alone was enough to bring me well enough through school but now that I am in uni I noticed how much I should be paying attention and that I should study more but its so hard...
@mikelmontoya2965
@mikelmontoya2965 5 жыл бұрын
@@fresharche6227 I don't know if it's because I have really really bad executive dysfunctioning or what, but I can't manage even focusing on one thing. For example, last year, most of the time I couldn't even drag myself out of bed. I didn't clean the dishes, I didn't clean the flat, I didn't order my bedroom, I didn't buy the things that I needed in order to survive (including food), I didn't cook, I skipped college A LOT... This sounds as if I was really depressed, but I don't think I were. Like, I felt bad (more anxious than depressed) for not doing all those things that I needed to do, but that wasn't the reason I didn't do them on the first place. I just couldn't do them. This year I'm trying really hard to do those things, and at least I'm eating, but still I'm doing only a fraction of the things I have to do.
@dawn8080
@dawn8080 5 жыл бұрын
Executive dysfunction is really a thing! Try not to feel ashamed, easy to say I know, took me 37 years to stop feeling guilty about it myself. I'm autistic and some days it's a major accomplishment to just get out of bed, clothe and feed myself nevermind going to work and interacting with the world. So in short you are not alone
@mikelmontoya2965
@mikelmontoya2965 5 жыл бұрын
@@dawn8080 I know it's really a valid thing, but it's hard not to be ashamed when no one, not even your loved ones, understand why you aren't able to do anything.
@sinceritynature202
@sinceritynature202 5 жыл бұрын
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,,
@Napukettu
@Napukettu 5 жыл бұрын
My doctor once explained they don't want to saddle people with diagnoses because it may label them unfit in the eyes of a potential employer and I was like f that. Give me a name and a label for the trouble I'm having and a label so I can prove I'm not lazy or imagining things and then get off your butt and help change the goddamn stigma. Because this shit's not going away but together we might change the overall attitude to a point where I can be employed without having to worry about my diagnosis being a label of some sort.
@Janaely
@Janaely 5 жыл бұрын
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!
@MrA2Zor029
@MrA2Zor029 4 жыл бұрын
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
@gracelarmee
@gracelarmee 11 ай бұрын
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.
@ashmac87
@ashmac87 11 ай бұрын
I don't believe in laziness, just barriers to success. Have you read Devon Price? Down with capitalism ❤
@ashmac87
@ashmac87 11 ай бұрын
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 ❤
@Huraszki
@Huraszki 5 жыл бұрын
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 😖
@Panteracide
@Panteracide Жыл бұрын
Oooof do I feel this. It took me until after a failed marriage and a 2-year-turned-3.5-year-degree to get a diagnosis for any of my.... 7?? different issues, and the guilt, shame, and self loathing/self persecution is brutal. The things you say to yourself are sometimes worse than what other people say; it takes so much to unlearn it.
@TeaTime97
@TeaTime97 5 жыл бұрын
Searching for a diagnosis has been just as, if not more stressful than my actual chronic illness. Thanks for the video
@mollyhamley
@mollyhamley 5 жыл бұрын
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.🙂
@absolutelyruth8025
@absolutelyruth8025 5 жыл бұрын
Great video. Thank you for taking time to make it.
@willowisp9150
@willowisp9150 5 жыл бұрын
Thank you so much for this! And your hair is so pretty 😍
@annakerstiensbottoms
@annakerstiensbottoms 5 жыл бұрын
Love, love, love this video! ❤️
@selena1731
@selena1731 5 жыл бұрын
I really needed this. Thank you
@meghanoconnor2468
@meghanoconnor2468 5 жыл бұрын
I needed to hear this today, THANK YOU!!
@errmjasmine
@errmjasmine 5 жыл бұрын
I needed this. Thank you 💗
@annettejones7777
@annettejones7777 3 жыл бұрын
I needed this so much. Thank you!
@maddie9303
@maddie9303 5 жыл бұрын
I really needed this right now! ❤
@starwatcher9919
@starwatcher9919 5 жыл бұрын
Thank you for making this video! ❤️
@aiya3130
@aiya3130 5 жыл бұрын
Omg thank you so much. I needed this desperately. It was transformative for me.
@devaneylovesopossums9150
@devaneylovesopossums9150 5 жыл бұрын
Thank you so much for this video, it means so much to me.
@abbyharnett6209
@abbyharnett6209 4 жыл бұрын
I really appreciated this today 💛
@wakeupandjess2148
@wakeupandjess2148 5 жыл бұрын
The 👏realest👏talk👏. Also life with a ~partial~ diagnosis. Weeeee! -PinkJess
@GwenRayden
@GwenRayden 5 жыл бұрын
Thank you for this. I love you, Jessica!! ❤️❤️❤️
@SeeKatFly
@SeeKatFly 5 жыл бұрын
This video has come at the perfect time for me. Thank you ❤️
@madeleinecarter8366
@madeleinecarter8366 5 жыл бұрын
Your hair is so beautiful!!!
@BridieTurtle
@BridieTurtle 5 жыл бұрын
This is something I needed prior to my diagnosis. Thank you so much!
@astrum376
@astrum376 5 жыл бұрын
I love your videos Jessica! Keep up the great work
@JLongb
@JLongb 5 жыл бұрын
Thanks for brightening my day! Haven’t even watched the vid yet but still
@alyssabeersprinzivalli88
@alyssabeersprinzivalli88 5 жыл бұрын
This spoke to my soul today, thank you Jessica!
@AlexirLife
@AlexirLife 5 жыл бұрын
So needed this today. Thank you xx
@perogieluver
@perogieluver 4 жыл бұрын
Absolutely LOVE this video!! ✨🥰🌸 thanks, Jessica 💛
@LaraMuzio
@LaraMuzio 5 жыл бұрын
Oh wow your hair looks amazing in this video!!!!
@carystownsend5811
@carystownsend5811 5 жыл бұрын
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
@bam111965
@bam111965 5 жыл бұрын
One of your best videos! And, that's saying quite a lot.
@Parquet_Dog
@Parquet_Dog 5 жыл бұрын
Wonderful Jessica, I needed to hear this so badly - it’s like you were inside my head! Thank you x
@sotzipporah177
@sotzipporah177 5 жыл бұрын
I really needed to hear this today
@silvie1104
@silvie1104 5 жыл бұрын
I'm going to listen to this every morning. Thank youuu
@theconfusedvampire
@theconfusedvampire 5 жыл бұрын
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. ^^;
@rukaijiri7371
@rukaijiri7371 5 жыл бұрын
I love your hair in this video!
@DirtyRottenPunkkid
@DirtyRottenPunkkid 5 жыл бұрын
This is so well timed. It spoke to everything I've been feeling lately. Thank you.
@mossmartinez6355
@mossmartinez6355 5 жыл бұрын
I learn so much from you, thank you . You are an incredible teacher.
@harleylecter7829
@harleylecter7829 5 жыл бұрын
Jessica, as usual, your hair is fab.
@kimberly_erin
@kimberly_erin 5 жыл бұрын
So relatable! Thank you again 😘
@maxa2852
@maxa2852 5 жыл бұрын
Thank you so much for making this video you helped me not feel so alone 💜
@biancaesteban1652
@biancaesteban1652 3 жыл бұрын
I love you! All of my thoughts just tumbled out of your mouth.
@maisie9705
@maisie9705 5 жыл бұрын
Very important video !! We need more of this acceptance ! Also your hair looks really nice 💕
@ladyclaire6957
@ladyclaire6957 5 жыл бұрын
I feel this SO MUCH. Your words make me feel loads better and not so alone :)
@lilyoh5780
@lilyoh5780 5 жыл бұрын
Thank you so much for this video, Jessica. I struggle with both guild and shame so much these days and this video made me feel understood. Thank you! ❤️
@chapplepeach29
@chapplepeach29 5 жыл бұрын
Your hair looks FANTASTIC!!!
@TheTechnoTiger
@TheTechnoTiger 5 жыл бұрын
The second half of this video is particularly insightful to me! I teared up a little bit.
@jupiter9596
@jupiter9596 5 жыл бұрын
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.
@tinaw.5538
@tinaw.5538 5 жыл бұрын
Your hair looks phenomenal today!!
@anddlizzle
@anddlizzle 5 жыл бұрын
Goodness, you are lovely! Thank you for your videos and willingness to educate.
@failureblanket8559
@failureblanket8559 5 жыл бұрын
Always feel better after watching these.
@aubreyclaireable
@aubreyclaireable 5 жыл бұрын
Hi! I just found your channel and I can relate with a whole lot of what you've been saying! Thank you for putting yourself out there. It's so hard to grant worth to yourself even though it's so easy to grant worth to everyone else. Thanks! ♥️♥️
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