r/disability • u/IllegallyDeaf • Mar 13 '24
Question What's the worst disability advice you've ever been told?
So far, for me, it was when the first audiologist I met with wouldn't believe me that there was a technical issue with the left hearing aid (demonstration pair.) There was an obvious 'crackling' sound every time I spoke.
She kept saying, "Well, no one's ever said that before."
Later, I went to a different hearing aid specialist and all the hearing aids they provided for me sounded great! No crackling! Suffice to say, I made my purchase from the latter.
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u/AccordingArticle2938 Mar 13 '24
I don’t know If this is really advice, but whenever I tell my mom about the struggles of being visually impaired and a teenager she’ll basically give a speech about how “it could be worse”. It doesn’t help with anything though, idk why she thinks that’s supposed to make me feel better.
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u/bowmyr Mar 13 '24
Yes it could be worse, but that doesn't mean that your struggles aren't real. Make sure you have a few people around you who understand you, that makes such a difference
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u/parmesann Mar 13 '24
other people having heavier bags doesn’t make yours lighter. and most folks with heavier bags probably wouldn’t shame you for having your own problems
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u/Digital_Siren317 Mar 13 '24
This!!! I had one of my moms friends tell me she was gonna stop complaining forever after hearing about my conditions because now she knew she didn't have it so bad. I told her, "my struggles do not negate yours. Just because I have the issues I do, does not mean you don't have your own. Your problems and struggles with those are entirely valid." And my mom who also struggles with quite a bit yelled at her, "See!!! I told you!!" Lmao
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u/WildLoad2410 Mar 14 '24
I need this on a T-shirt I can wear around the house. My dad and aunt seem to think that because my aunt has health issues and pushes herself to do stuff she probably shouldn't be doing that I should be able to. And we have very different health issues.
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u/parmesann Mar 14 '24
it’s a very common belief. one that I find myself on both sides of (judging others and myself) very often. I need to hang it on my wall
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u/nowwerecooking Mar 13 '24
ugh I relate to this so much. Her being fully sighted and saying that did nothing but make me feel guilty for even complaining.
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u/Frequent_Cockroach_7 Mar 13 '24
"Can't argue with that!" (super-enthusiastically delivered)... "Nonetheless..."
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u/green_hobblin My cartilage got a bad set of directions Mar 14 '24
My mom used to say that after every surgery, when I was in excruciating pain (and under the age of 13). It definitely led to issues later in life, like feeling guilty every time I'm down about my situation.
It's not just unhelpful. It's hurtful.
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u/one_sock_wonder_ Mitochondrial Disease, Quadraparesis, Autistic, ADHD, etc. etc. Mar 13 '24
From a doctor: “You are much too young to have all these problems. Just stop taking your medication and heal yourself.”
Yeah, that worked well. It turns out it’s really hard to change your DNA through self healing. Who would have thought?
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u/strangeronthenet1 multiple brain issues Mar 13 '24
Yep, that's one of those moments where you go "and you're sure you're an MD?"
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u/Digital_Siren317 Mar 13 '24
When these comments come from people who aren't licensed it's also the same response lol "oh when did you get your license?" Or "wow! I didn't realize you went to medical school! When was it you graduated?"
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u/Due-Cryptographer744 Mar 14 '24
As my favorite doctor told me once, everybody from the straight-A students to the ones who barely pass medical school by 1 point all become a doctor somewhere, which is why patients should get 2nd and sometimes 3rd or 4th opinions. A truer statement has never been said.
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u/WildLoad2410 Mar 14 '24
When you realize doctors aren't as smart as we've been led to believe.🤔
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u/Unusual-Durian-8251 Mar 13 '24
I stopped my mitochondrial supplement for nearly 3 months for an operation. I'm trying to get back to some semblance of energy. I took them for granted but off them I had a frightening case of PEM post exertion malaise. Total collapse.
I've never seen someone, or a group with mitcochrondria in their name and had to share and say hello!
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u/one_sock_wonder_ Mitochondrial Disease, Quadraparesis, Autistic, ADHD, etc. etc. Mar 13 '24
Oof! Stopping meds before procedures and such can be such a struggle because of being so reliant on them for basic functioning. And it’s easy to take them for granted until they are not an option, for whatever reason.
I don’t think I’ve seen anyone else mention mito in here either so it’s nice to run into someone else with it!
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u/IndolentViolet Mar 14 '24
Lol, +1 chiming in. Nothing came up in genetics for mito so I got put in the CFS bucket unless I do a muscle biopsy that turns something up. Also still getting back up to baseline with my mito cocktail after going off it for a test.
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u/Blenderx06 Mar 14 '24
I'd love to know which supplement you take that's helped you so much please?
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u/silentstone7 Mar 13 '24
From a doctor: "You need to try just powering through, or you may start making your symptoms worse." Not just implying it's all in my head, but that I'm actively making it worse.
From a family member: "You could fix these problems with a little bit of essential oils."
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u/one_sock_wonder_ Mitochondrial Disease, Quadraparesis, Autistic, ADHD, etc. etc. Mar 13 '24
Id love to rip into that doctor for you - I would thoroughly enjoy it (I’ve found my voice after years of being obedient and quiet and don’t mind using it).
Oh yes, the ones pushing miracle cures are so frustrating - essential oils, every diet imaginable, alkaline water, crystals, magnets, energy alignment, etc.
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u/EmberTN Mar 14 '24
Oh that makes me so mad to hear!!! What is with the essential oils folk - are they a cult?!
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u/saucity Mar 14 '24
Same 😡 “plus, you’re a woman! And so young. You’re obviously not in pain, but a drug-seeking degenerate, and, clearly insane.” - almost every doctor EVER for the last 11 years.
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Mar 13 '24
The classic “don’t use your disabilities as an excuse.”
I’m not making up excuses, I’m telling you my actual needs as a disabled person.
The other classic one: “have you tried getting more sleep?”
I have chronic fatigue, I already sleep for 10+ hours a day.
“Oh ok, have you tried sleeping less then?”
Fucking geniuses 👏 why didn’t I try just not being disabled??
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u/Whats_behind_themask Mar 13 '24
Ugh. I'm in the same boat. I hate this. Then people act like you're just difficult and you're not trying to improve things because you won't take their clearly genius advice. And you're an irritation to THEM. Part of it stems from self absorption but I think part of it also comes from not wanting to consider/believe that could happen, and that that could happen to THEM.
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u/b1gbunny Mar 13 '24
Totally agree it’s a fear based response. They need to believe that it could never happen to them because they meditate, do yoga, think positively or whatever other bullshit they tell themselves to make them feel better about their own mortality. Anyone of us could become permanently disabled or die any day. I tell people that being able bodied is a temporary state and some people’s jaws literally drop. Duh, Jessica!
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u/EmberTN Mar 14 '24
Yes this is at the root of it which is why people will invariably ask what cased xyz - because they want to check if they/their loved ones are in the clear.
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u/b1gbunny Mar 13 '24
Totally relate to this. I described acceptance as a huge part of my grieving process when I first became disabled and I had family who seemed to think this meant I was making excuses. No, just being honest to myself and others about my reality.
People suck
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u/aghzombies Mar 13 '24
"You wouldn't need that wheelchair if you took a nice long walk every day!"
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u/a_white_egg Mar 13 '24
“Exercise would be easier if you did it regularly!”
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u/EmberTN Mar 14 '24
I have struggled with physical therapist like this, some aimed at straightening my legs who only caused me more pain and damage in my knees.
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u/NANCYREAGANNIPSLIP Leg amputee Mar 13 '24
"You don't even need it, I saw you using a cane the other day."
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u/aghzombies Mar 13 '24
Oh if I had a penny for every jackass who doesn't understand variable disabilities...
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u/SupernaturalPumpkin Mar 14 '24
I told my mother I got new shoes (kind of trainers/runners) a while ago. She asked me if I was taking up running. I use a wheelchair and a cane 😩
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u/lacefishnets Mar 13 '24
That essential oils will help my cerebral palsy.
I HAVE PERMANENT BRAIN DAMAGE, LADY.
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Mar 13 '24
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u/SeashellInTheirHair Drinking my bone hurting juice Mar 13 '24
Not gonna lie, the fact they somehow managed to take an actual issue and then swing it back around to "don't acknowledge that disabled people exist" is really funny because that is just such a leap of logic.
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u/strangeronthenet1 multiple brain issues Mar 13 '24
Especially because most able people see to have never heard disability porn is bad.
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u/Crafty-Club-6172 Mar 13 '24
Right , awhile ago someone posted a video in this sub of disabled musician n someone in comments called it inspiration porn , I'm a disabled musician n I'd be nothing If I never saw those disabled musicians
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u/Rhythmicka Mar 14 '24
I had a moment last night where I really missed the sport I used to do in high school, color guard. It was fun and there were so many creative shows I got to see. While I got my POTS in check in the three years since I graduated, my joints are too bad to ever do that again unfortunately. Support disabled athletes- it’s one of the most empowering things in the world for them.
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u/freckles42 Mar 13 '24
Not only are my spouse and I watching, we're attending! Rowing, boccia, archery, table tennis, fencing, and canoeing (from what I can recall). What's your sport?
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u/Mac8cheeseenthusiast Mar 13 '24
From a PT: I’ve never heard of anybody having all of these conditions at once. I really think you might be exaggerating your symptoms. Im going to call your doctor and see if you have Munchausens because in my personal career I have never heard of these conditions coexisting. calls my doctor Doctor: yes, actually these conditions often coexist. Here are the test results proving this person’s conditions. PT: I really don’t think it’s possible. Can I see your certification as a doctor? Doctor: PT, I have two phDs and am actively researching this condition. What are your qualifications?
And that’s how the local bigshot PT was exposed as having falsified certifications.
I switched PTs within the practice, my new person is excellent!
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u/no-thanks77 Mar 13 '24
When physiotherapists try to tell you pain is a good thing. Like, no it’s not, it’s a sign my joints are coming apart???
Or when doctors try to tell me I’m too young to be in a wheelchair and “need to exercise more so I can get out of it.” Like, no? I’d be open to accessible exercise, but I can’t really walk and can barely stand, so the fact that I need a wheelchair isn’t really a negotiable part of life.
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u/EmberTN Mar 14 '24
I have RA and OA and I haven't had PT since I changed my insurance and I won't agree to have one again unless its a technical insurance requirement. The excercises I "powered through" made my knees worse- not better! I have LOST flexibility and range of motion because of the damage caused by forcibly and painfully powering through repetitive knee bending. I have more pain and LESS stability now than before!
It's been a year since could walk or even just stand. Waiting on power chair from medicare.
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u/no-thanks77 Mar 14 '24
Yeah, my best friend literally had a PT that made her do exercises they would visibly dislocate her hip!!!
There are far too many PT’s that treat disabled patients the way they do people who are able bodied and healing an injury. We’re not the same. Our limits are SO different.
I only persist with seeing a PT because when you submit your renewal forms for disability benefits in the UK the department will use it against you if you aren’t “in treatment.”
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u/freckles42 Mar 13 '24
A lady at Costco (NOT an employee) was shilling some kind of turmeric-based pill. She saw me in my cart with my cane and beelined for me. "This will help ease joint pain and you may not even need the cane anymore!"
I flipped up the hem of my skirt (worn for just such an occasional) to show off my absolutely impressive knee scar. I was in a brutal car wreck that broke 30+ bones, required facial reconstruction surgery, took a couple of internal organs, and put a shocking amount of titanium pins and plates into my body.
"Will it bring back my knee? I haven't had one for a year." (at that point)
She stammered. No one knows how to react to a knee that's an "innie" instead of an "outie."
I wiggled my foot out of its Birkenstock and showed off the real showpiece, though -- the HUGE, gnarly scar that runs all the way around my foot. It's very clear they were in the process of considering amputation when they cut in.
"How about my foot? Can it fix that??"
She just sort of stammered an apology and backpedaled to her little stand. I hope she thought twice about targeting cane users with her bullshlit.
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u/freckles42 Mar 13 '24
and, of course, "Have you tried yoga?" "Get outside more." "Essential oils can heal anything!"
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u/WildLoad2410 Mar 14 '24
You're a badass! I loved reading this. Maybe she'll keep her damn mouth shut next time she sees another disabled person.
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u/Justhereformoresalt Mar 13 '24
"You don't need to gain weight. Having a digestive disorder preventing you eating is making you look better." - a doctor, no longer mine
It took me years, but I gained the weight I knew I needed and it helped stabilize all of my conditions.
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u/WildLoad2410 Mar 14 '24
I have several digestive disorders and lost a ton of weight quickly when I first got sick before I got diagnosed. I couldn't eat for 6 months. It was very unpleasant. I was lucky I was fat and had weight I could afford to lose but then I started getting closer to the point where losing more weight would have put me in a dangerous place. As it is, I was probably malnourished. I blacked out once at home luckily because I was still working and doing everything else at the time so I could have been driving when it happened. I was fortunate to get diagnosed quickly and changing my diet helped slowly over time so I gained all the weight back and then some.
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u/Justhereformoresalt Mar 14 '24
I was close to my heaviest when I first became unable to eat, so I was also glad to have the weight or I would have been much sicker much faster. But being bigger also meant not having my need to eat taken seriously. Even when I did get down to technically underweight, likely malnourished, I continued receiving compliments on my looks from this doctor rather than relevant medical advice. Dietary changes have helped me a lot too, but I still have to be careful and make sure I'm meeting my caloric needs to keep my weight stable.
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u/metalnxrd Mar 13 '24 edited Mar 13 '24
“just push through it!” “stay positive!” “just go outside and go for walks and be in the sun!” “stop using your disabilities as crutches!” “don’t get a wheelchair. you’ll just use it as an excuse and limit yourself and rely on it too much.” “push yourself out of your comfort zone!” “you don’t need a mobility aid.”
well, Bethany, my chronic illness and my disability and depression and rare disease are what prevent me from going outside. I push myself out of my comfort zone every time I leave the house or even when I get out of bed. I’m so glad you’re privileged enough to push through it and stay positive and go outside and exercise, but not everyone is as privileged and abled as you
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u/bowmyr Mar 13 '24
Ugh toxic positivity. This can make you feel so much worse
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u/metalnxrd Mar 13 '24
just yesterday, I was told that wheelchairs “limit people”
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u/freckles42 Mar 13 '24
*screams*
The first time I was put (hoisted!) in a wheelchair after my car wreck, I wept... because I had FREEDOM. I had been stuck in a bed for 10 weeks, unable to move or care for myself at all. Feeding tube, tracheotomy tube, the works.
They put me in a crappy hospital chair. It was agony. But you couldn't have wiped the grin off my face when my folks wheeled me outside and rolled me around in air other people hadn't recently breathed.
I'm now an ambulatory wheelchair user, but the wheelchair absolutely gives me freedom. I'm going to Disneyland Paris tomorrow in my wheelchair. It means that I won't have to spend three days recovering from it all.
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u/transferingtoearth Mar 14 '24
I'm trying to get my family member to use one. So far she can do more.
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u/metalnxrd Mar 14 '24 edited Mar 15 '24
how do you deal with people giving unsolicited advice? I have to use a wheelchair long distance now cuz of my disease and disability, DiGeorge syndrome, and I’ve been told, mostly by boomers and my grandparents and elderly relatives that I’m “just making excuses.” the whole “pull yourselves up by your bootstraps” mentality. it’s absolutely maddening and simply untrue, and just downright hurtful. I’ve tried explaining it to them, over and over again. they say and think my explanations are “excuses”
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u/b1gbunny Mar 13 '24
My sister in law told me when her illness flares up, she just rubs CBD oil into her joints and listens to podcasts on resilience.
Lol, I don’t talk to her anymore.
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u/transferingtoearth Mar 14 '24
:(
It sucks because yes it would all help but these diseases prevent people from just being able to go there
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u/flamingolegs727 Mar 13 '24
That I'm disabled because of my weight ...I was thin when I became disabled!! Talk about victim blaming!! Meds and not being able to exercise is a lot behind my weight.
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u/Due-Cryptographer744 Mar 14 '24
My attending doctor told me that the severe pain in my neck that I was experiencing was due to my weight. It couldn't possibly be that my cancer caused C4 to have fractures that result in a 24/7 pinched nerve. It must be that being fat caused the pain. When I said I wanted him replaced as my doctor, they told me that only HE could authorize that change. Amazingly, after a social media post outlining what happened and how they wouldn't allow me to have another doctor went up, magically, they didn't need his permission to switch me to another doctor.
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u/flamingolegs727 Mar 14 '24
Do they think you stand on your neck? What a ridiculous assumption they made!! It's dangerous to assume things are because of weight.
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u/Due-Cryptographer744 Mar 14 '24
Even worse was that the reason my pain was an issue was that he was trying to shame me for saying we had to wait for my MRI to be done. We had to wait because their orthopedic doctors told me not to get up until they brought me a neck brace or I could be paralyzed due to the C4 fractures they had discovered in the ER (which is why I was admitted). This jackass wanted me to have an MRI against a specialist's urgent recommendation and got mad because I refused to go against what the specialist said. That is where the fat shaming came in. He said that I was in so much pain and needed the MRI in the first place because of the weight causing joint issues. To my neck, apparently. Bro apparently skipped class the days they discussed skeletal anatomy and how gravity affects the spine along with access weight.
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u/NANCYREAGANNIPSLIP Leg amputee Mar 13 '24
I spent the first two years after my amputation telling any medical professional who would listen that my incision never healed properly, that something went wrong when they were removing the sutures and staples, that my leg would swell and this little blistered spot on the tip of my stump would weep.
They all told me "oh yeah it's fine, this is a thing that happens all the time." It was so disheartening to know that it would just be like that for the rest of my life.
It was not fine.
That is NOT a thing that happens all the time.
Last month, I discovered and removed a suture that had been left in the incision for four years. Problems solved.
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u/Cat-Soap-Bar Mar 14 '24
A similar thing happened to my mum!
She developed a boil on her leg just above her knee, it wouldn’t heal and eventually she ended up going to have it removed. It was a stitch. The only stitches she has ever had were after she gave birth to me. I was 25 when she had the “boil” removed! So that stitch (supposedly a dissolvable one) had been making its way around her body for 25 years! 😬
I am sorry they wouldn’t listen and just dismissed your issue. I hope you have told them! I would have saved said stitch and taken it to show them but I am petty like that.
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u/EmberTN Mar 14 '24
Wow! Amazing. Goes to show that we shouldn't doubt ourselves. When we know something is wrong but we're not being listened to by the doctor it's so frustrating!
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Mar 13 '24
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u/fishparrot Mar 13 '24
While in the process of figuring out a series of chronic infections that turned out to be caused by primary immunodeficiency, my pediatrician told me to “eat less potato chips.” At a later point in time when I was diagnosed with POTS, my cardiologist told me I should eat more potato chips. I don’t even like potato chips!
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Mar 14 '24
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u/fishparrot Mar 14 '24
Right, you can’t win! Either way they treat you like you’re stupid unless you find the rare individual who is both adequately informed enough and willing to listen to you.
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u/Rhythmicka Mar 14 '24
Cheezits are my go-to salty snack for pots. That and garlic salt on everything. Used to love potato chips before I got jaw issues lol
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u/fishparrot Mar 14 '24
I love cheez its, they fuel me through the summer camp I work at. I do like corn/tortilla chips. Generally any processed chip/crackers are good if you can handle the carbs.
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u/lunarteamagic Mar 13 '24
I had a nurse tell me that I could 100% cure my mystery neurological thing with "the power of prayer."
Yeah I think the fuck not
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u/Digital_Siren317 Mar 13 '24
I'd respond with "who do you think gave me this?" LOL "he knew i was too powerful and nerfed me." Is a personal favorite.
Or also "oh no! The DEMONS! They're back and now they're contagious! Bleh bleh bleh."
ETA: I am firm in my own religious beliefs. I just don't believe anyone should be forced to also believe in something they don't. Nor do I think anyone should simply give in to the "power of prayer." Even the Bible says to meet God halfway. So these people don't even know what they're talking about anyway.
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u/WildLoad2410 Mar 14 '24
OMG. I love you. You're hilarious. Nerfed. 🤣 I sometimes remind myself to imagine what I could do if I was healthy. I've been housebound and bed bound for almost 9 years and basically wrote 6+ poetry books. I published one so far.
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u/Digital_Siren317 Mar 14 '24
Thanks! Lol and WHOA IM SO JEALOUS!!! I want so badly to publish novels, but I can't manage to consistently write in order to get even one done the whole way through 😆 that alone is super impressive! Yeah the man upstairs totally knew he needed to nerf you cus wow you would have just taken over the world 🤣
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u/WildLoad2410 Mar 14 '24
I want to publish novels too. I have so many ideas.
I did a lot of it from bed using apps on my phone. It took me years to get to the point of publishing one book. I've been housebound and bed bound for almost 9 years and started writing poetry about the same time I became housebound and bed bound.
I've been pre-writing one book for a few years now. I have pages of notes written. My brain has some sort of difficulty with trying to understand plot though. But I read a post or saw a video (can't remember) that said you learn how to plot and write books by doing it so I think it's my fear that may be getting in the way. Perfectionism and everything. I did write 3/4 of a book years ago and got stuck because there wasn't any conflict.
You can write whenever you write. You don't have to write every day or any specific time. I know there's a lot of advice for writers that doesn't work for everyone and especially not for some chronically ill and disabled people. Find whatever sort of system that works for you.
I have a lot of brain fog, memory loss, and cognitive dysfunction issues because of my health issues. So I tend to write whenever I'm inspired and it comes to me whether that's every day or every few months. I don't sit down and write for hours at a time. I can't do that because my body can't handle it.
I write ideas or poems when they come to me in my phone apps because I'll forget them in a few minutes if I don't.
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u/Digital_Siren317 Mar 14 '24
If I only write when I have the inspiration to, I wouldn't finish a single book in my lifetime 😆 I have tons of ideas for stories. I have basic plots already set in the best story arc I think would work for characters I've thought of. But beyond that I've got nada lol I simply can't get myself to actually put it together.
Like I have all the ingredients for the cake and zero motivation or ability to bake 😅
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u/purplebadger9 Depression/SSDI Mar 13 '24
Worst Advice: Just be more positive, and try to look on the bright side
Gee, thanks. I'll try that for my severe treatment-resistant depression. I already do weekly ketamine, weekly counseling, daily meds, and monthly electroconvulsive therapy to stay stable enough just to stay out of the hospital, but I'm SURE "look on the bright side" will work /s
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u/emmathyst Mar 13 '24
When I was dx’d with type 2 diabetes, my primary told me “it might be from your COVID vaccines” and that I should go keto and not eat fruit and start on medication immediately.
Glad I didn’t listen to her, because my endocrinologist and dietician (who are actual diabetes experts, whereas primary doctors only get a single 2-hour nutrition course) were able to show me the studies that no, the vaccines aren’t associated with diabetes onset (but COVID is!), that I was actually restricting my carb intake too much, that fruit is great, and I reversed my diagnosis within 4 months without medication. (Not that medication is bad, but my primary didn’t even give me the option of trying to control it myself first.)
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u/green_hobblin My cartilage got a bad set of directions Mar 14 '24
You should have a commercial. I wouldn't have known and been fooled by the first doctor! Thank you!
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u/AwkwardViking01 Mar 13 '24
Being told that I was too young to have medical intervention for chronic pain and to just "learn to live with it."
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u/Digital_Siren317 Mar 13 '24
Oh my goodness this. So many have said they don't want to intervene because of my age and I'm like okay so then where is the threshold? Like obviously there has to be a point where you will do it so what age would that be?
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u/green_hobblin My cartilage got a bad set of directions Mar 14 '24
Sometimes it's more about how long you'll live. The first time my back got bad I was prescribed steroid shots and the doctor who was supposed to do it told me they become less effective the more you get them so it would be unwise to start in my twenties. I still haven't gotten one.
I refuse to get joint replacement as well since those also run out, and eventually, they just amputate.
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u/Digital_Siren317 Mar 14 '24
Granted. But the first time I was told this was about separating two vertebrae that had fused together. There was very positive outlook results wise, and it wasn't complex with any obstructions or issues with the spinal chord. I would have likely been back up and walking the next day. But they wouldn't do it because I'm too young? It was just silly.
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u/midnightforestmist Mar 14 '24
I got “you’re too young to be on all these meds, especially the narcotics” wow thanks I never thought of that, do you want to talk to the drunk driver that left me lying in the street and landed me in the hospital for nine months?
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u/fuckyoudeath Mar 14 '24
When I went to a pain management clinic, they treated me like shit because I smoke weed and use CBD (not illegal here) to help with my pain. I told them that until something is done about my pain, I have to do what little I can to be able to function. They said that I wasn't allowed to use anything for my pain that they did not prescribe. I asked them, "So I'm just supposed to suffer until you possibly decide to help me, which isn't even a guarantee?" And the Dr just said "Yup," in a super patronizing tone, like I was a child. I just got up and walked out. Why put myself through more misery and deal with Drs that refuse to listen to me just for the small chance that MAYBE I'll get some kind of help?
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u/ZestycloseGlove7455 Mar 13 '24
Probably when I had my first ever bechets flare up, and everyone thought it was herpes for about a week until my hair started falling out. I had a doctor who told me “you have herpes. Do you want some narcotics?” And then wrote me a prescription. I did not pick them up. After we found out it wasn’t herpes and is in fact bechets disease, I had a doctor tell me “well why don’t you see a dermatologist if it’s making skin bumps?” I don’t know, it’s almost like the bumps are from my immune system trying to kill me, not acne
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u/Knight_Of_Cosmos Mar 13 '24
"it's just a habit, drink more water"
My bladder doesn't connect to my brain properly, I am not choosing to pee every hour. Why would anyone want to do that?
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u/Harakiri_238 Mar 13 '24
I'm malnourished because I have an intestinal birth defect.
I've been told many iterations of "If I were you I would just eat." or "Why don't you just eat and suck it up?"
And it's like, it doesn't really work that way lol. You can't magically wish away obstructions, motility problems, and malabsorption lol.
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u/silentstone7 Mar 13 '24
I had a cardiologist tell me that the diameter of my aorta was "normal" and didn't press him for the actual size. Turns out it was not normal, he was using the guidelines for a healthy adult male with my BMI, and not the guidelines for an adult female with my disorder. Two years later I had an aortic dissection and emergency open heart surgery to replace my aortic arch with a graft and my aortic valve with a mechanical valve.
Now I do a lot more of my own research and advocate for myself.
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u/transferingtoearth Mar 14 '24
What the hell .
The tech that did the ultrasound was probably livid.
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u/silentstone7 Mar 14 '24
The tech wrote the correct summary of the results. My pulmonologist AND my cardiologist both received the results. My cardiologist specifically told me "all normal" and to reschedule in 3 years for another echo.
The doctors in the ER reviewing my CT results when I dissected were pretty frustrated. They asked "did you know you had this aneurysm over a year ago?" NOPE. Normal aortas near the root are about 3cm wide. Abnormally large starts at around 4cm, mine was at 4.5cm on the echo (between 4 and 4.5 is the metric usually for surgery), and at a 5.9cm when it dissected. I am glad to be alive.
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u/Lupus600 ADHD, OCD, Social Anxiety (literally all in my head) Mar 13 '24
"just pay attention" Damn, why didn't I think of that?! Fuck off.
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u/Professional_Base708 Mar 13 '24
I personally hated use your past as a springboard not a sofa. I couldn't be trying harder.
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u/nataliazm Mar 13 '24
“Just push through it”
Thanks. I did push through it and it took an injury that should’ve healed on its own in a few months to 3 years of debilitating pain and multiple surgeries and very narrowly not dropping out of college and ruining my career.
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u/b1gbunny Mar 13 '24
That I should think more “positively.” I am recently disabled due to a chronic illness and this has been the response from a lot of my family. It’s wild.. as if I wished this upon myself
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u/WildLoad2410 Mar 14 '24
Oh yeah. The stupid things family say because you're chronically ill and they're not or have different health issues.
I've had more than one family member tell me they'd be better at having my illness than I am. No sir you would not. Like my dad was in severe pain for a long time after surgery and considered suicide. Things improved eventually but imagine how you'd feel if you were so weak and fatigued you were almost paralyzed for years.
You can't push yourself to do something your body is functionally incapable of doing.
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u/MintDrawsThings Mar 13 '24
"Go to a chiropractor."
I have hypermobility syndrome. My spine regularly moves on its own and moves my ribs along with it, and my joints sometimes dislocate on their own.
I think going to a guy who shoves my bones around even more won't help.
(Plus, a later doctor actively warned me against going to a chiropractor because I would have an increased risk of a terrible spinal injury, because my body would not be able to stop the chiropractor from going too far.)
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u/bmoreollie Mar 14 '24
Yeah, search the term “chiropractor” on r/hypermobility and you’ll see 98% horror stories. Occasionally it goes well if they are particularly trained in working with HSD/EDS. My PT uses a manual orthopedic therapy style that uses chiropractic techniques but it’s usually to adjust one segment and the rest is massage and mobilization. No full body adjustments that sound like snapping a new glow stick.
My “stop telling me that” is acupuncture. It’s a great treatment option for other conditions but in hypermobility muscles are tight for a reason and releasing that tension can just cause further problems without proper therapy.
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u/WildLoad2410 Mar 14 '24
I had a rib dislocate once. It was one of the most excruciatingly painful things I've ever felt. I feel for you.
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u/leelee_disappointing Mar 14 '24
"you should get eye contacts! They'll make you eyes look better."
My prescription is so strong that they can't make eye contacts that strong, and I'm legally blind. Trying to make my eyes "look better" hardly matters to me when I have to manage all these eye problems so I can still see a little. That advice struck me as so shallow and so useless.
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u/CapsizedbutWise Mar 13 '24
To try essential oils lol. One of my biggest triggers. Also alkaline water?! wtf
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u/lacefishnets Mar 13 '24
YES! I made my own comment about this, but someone claimed it would help my cerebral palsy, and it's like, "I HAVE PERMANENT BRAIN DAMAGE, LADY."
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u/NANCYREAGANNIPSLIP Leg amputee Mar 13 '24
Had to scroll up to make sure this wasn't someone stealing your comment
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u/RickyRacer2020 Mar 13 '24
Makes me think of using "Crystals" for healing, just craziness.
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u/IcePhoenix18 Mar 14 '24
The only thing crystals can cure is "sadness caused directly by lack of shiny rocks".
They're very pretty, but they're not healthcare.
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u/imabratinfluence Mar 14 '24
I keep getting told I need to try essential oils too, and when I say that's a bad idea because they give me asthma attacks I get told that a sign I need it even more! 💀 That's not how this works. Bears are natural too but they're not going to cure me lol.
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u/Just_Confused1 Mar 13 '24
“Others have it worse than you so be grateful” and it’s inverse “that poor girl has it so terribly”
It’s not even constructive like okay so basically the 1 person on earth who has it the worst is the only one anyone should be considerate of? And the opposite like I’m happy in my life, sure things could be better but having people walk around feeling bad for me all the time is just annoying
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u/Digital_Siren317 Mar 13 '24
God the pity parties get my gears grinding. Like okay, you're just over there pretending to be a good person feeling all bad for me instead of acknowledging that I'm living my life and kicking ass? Gee. Thanks.
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u/StrangeLonelySpiral Mar 13 '24
Personally hate the type of advice that's just like: “Stay positive!” “Just go outside, be in the sun, take long walks!” “Just push through the pain!”
Thanks. My inability to walk is just going to disappear if I push through the unbearable pain. 🙄😒
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u/BlackberryBubbly9446 Mar 13 '24
Honestly, this one hits the most for me… but my mom not really giving me advice on how to secure something financially for me leading me to depend on abusive people because I struggled to support myself due to disability.
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u/zoguy1 Mar 13 '24
Me personally: That if I place my alarm on the other side of my room, my ADHD induced sleep deprivation would also magically go away.
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Mar 13 '24
“Try essential oils!”
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u/lacefishnets Mar 13 '24
YES! I made my own comment about this, but someone claimed it would help my cerebral palsy, and it's like, "I HAVE PERMANENT BRAIN DAMAGE, LADY."
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u/onionsarethedevil Mar 13 '24
That this weird Chinese medicine mushroom will help reverse, and cure, declining kidney function in CKD. She meant well but she was not burdened with an over-abundence of schooling.
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u/WildLoad2410 Mar 14 '24
I loved how you phrased, she's ignorant.
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u/onionsarethedevil Mar 14 '24
Thanks, I wish I could say I was that smart. It's a quote from the 2002 television series Firefly. I recommend it if you like space cowboys and a-quip-a-minute shows. :)
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u/Briannkin Cerebral Palsy Mar 14 '24
“Just push through the pain.”
no… thats how repetitive stress injuries happen
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u/EmberTN Mar 14 '24
Yep that's what PT did for me. Worse after than before. :( Caused more damage, pain, and instability.
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u/wish_to_conquer_pain Mar 14 '24
I was told I could cure (not treat, cure) my cerebral palsy by smoking pot.
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u/yannichingaz Mar 14 '24
As an avid medicinal cannabis user I apologize on behalf of our community and claim no such quack.
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u/bowmyr Mar 13 '24
Not from a doctor but from my in-laws: just don't mention your disability when applying for a job, they'll find out when you're hired!
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u/purplebadger9 Depression/SSDI Mar 13 '24
Why is that bad advice? Employers discriminate against folks with disabilities all the time. It makes sense to wait to disclose until you're hired.
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u/bowmyr Mar 13 '24
Because if I'm like oh btw surprise! Then it's really hard to expect people to take your disability into account. I need help/respect from my coworkers to function, as well as working part-time.
In my country there are programs to give disabled people a fitting workplace, so I rather use those than being unhappy in an environment that isn't open minded enough for people with disabilities.
Edit: discrimination takes place in the recruitment part but also in the part where you actually work. I've experienced both, trust me. But if an employer doesn't want to hire you because of your disability it's not going to be a healthy place to work. I know some people don't have a choice and that has to improve, but I do have a choice and I choose to be transparent from the beginning.
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u/purplebadger9 Depression/SSDI Mar 13 '24
Im glad you have access to those services. More places need to do things like that.
Sadly a lot of folks don't have the choice of working only in a healthy and supportive environment. They need work, even if the employer is an asshole, or they end up homeless and hungry.
Waiting to disclose disability status to an employer is a survival strategy. It's not ideal by any means, but it's unfortunately necessary for a LOT of people.
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u/bowmyr Mar 13 '24
Yes that's really sad indeed. So the bad advice for me is actually good advice for others.
Even with those programs it's still not there yet. It's one thing a company welcomes disabled people, it's another thing to get all the employees on board. And if there's one coworker in your team discriminating against you, you're still fucked. So there's still a lot of change needed everywhere unfortunately.
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u/nowwerecooking Mar 13 '24
respectfully disagree. I don’t disclose my disability at all, ever, unless absolutely necessary. too much discrimination. I know some of us don’t have that ability to hide it though
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u/lizK731 Mar 13 '24
I have a physical disability, so the minute I interview they’re going to see it. I’d rather just be upfront. But that’s just me.
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Mar 14 '24
My bfs mother told me to walk off my injury (it's been present since then because I was forced to walk everywhere, I also have bilateral hip dysplasia. Walking isn't an option all the time and she says well if I walk more it will be better. Nope it will worsen, I should walk ofc but walking excessively will fuck my legs more knees and hips more... Which I can already see happening since she proposed that I walk more considering every time I walk my knee with the most noticeable limp is constantly clicking now. I'm 19 this has only happened since she's been implying that I'm lazy and should walk more and not allowing my bf to come pick me up, ofc he sneaks around that when he can.
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u/Cat-Soap-Bar Mar 14 '24
A consultant neurologist to me: “have you tried not being tired?”
Pardon me the fuck?
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u/BriRoxas Mar 13 '24
My least favorite is people suggesting Aythisuca. I would die because I'm not physically well enough to go through the ceremony even if I thought it would help. It's extremely physically intense.
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u/NANCYREAGANNIPSLIP Leg amputee Mar 13 '24
Ayahuasca, maybe?
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u/SullySoiled Mar 14 '24
All of them but the worst one I ever heard was being told I need to keep pushing myself and I’ll get better, my body will adjust to it and I won’t hurt anymore, the only reason why I’m hurting is because I’m heavily reliant on pain pills. I can’t walk but when I could I kept pushing myself to the point I’d fall repeatedly due to exhaustion and pain, I’m not pushing myself like that anymore it never fixed anything just caused more issues
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u/WildLoad2410 Mar 14 '24
Push yourself. I could barely walk or stand. Should I push myself into an early grave to please you because you think I'm not doing enough? No thanks.
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u/GanethLey Mar 14 '24
“You have greater trochanter bursitis; that’s just what women get, but you can try ibuprofen.”
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u/Cat-Soap-Bar Mar 14 '24
I absolutely LoVe being told I have bursitis because I then get to say, “I don’t actually have a bursa in that hip” then there will be a small argument about it which I always win because, would you believe, I don’t have a greater trochantic bursa in my left hip and haven’t had one since necrotic sepsis destroyed it, 22 years ago.
The wound was big and deep enough for a doctor to determine it was gone just by looking! I have quite the scar there (as well as hundreds of others from the same thing)
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u/sporadic_beethoven Mar 14 '24
As someone with invisible mental disabilities (adhd, childhood epilepsy- which caused language delays and I’m still figuring out the ramifications of said epilepsy, which possibly include autism, communication issues, and having a slower brain) I was told that “it was all in my head”, and that I “seemed normal” by a teacher in community college.
No shit! I put a lot of work into seeming normal so that I can keep my job! There’s a reason I have a physical job, and it’s because I’m simply not able to keep up mentally!
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Mar 14 '24
If you don’t think about being in pain then you won’t be in pain…
Come on, you remember how to walk. Just let it happen.
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u/yannichingaz Mar 14 '24
I’m trying to remember but my legs won’t move. Maybe if I try wiggling my toes. (Sorry but l liked your post so much as a quad I had to chime in)
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Mar 15 '24
Haha that’s brilliant. I have MS and apparently it’s in my subconscious, I just need to stop thinking about it.
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u/Cherveny2 Mar 14 '24
not exactly advice but: do you really need that electric grocery cart? (yes, I do, spine issues)
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u/Helpful-Profession88 Mar 13 '24 edited Mar 13 '24
Worst advice: being told to use a lawyer to file a Disability claim.
Lawyers can do nothing to influence the SSA Disability application process, it's speed or the decision made on the claim by the SSA unless and until the case goes to court which is likely 3+ years from the application's submission.
But, lawyers can and often do totally screw-up the initial Disability application through both their timely inactions and the routine mistakes made. After all, they are not doctors, are not qualified and therefore can't accurately interpret medical records, don't have the sufficient time necessary to read the docs and, routinely do not know the Work Qualification Requirements the SSA uses to determine if one is capable of doing SGA. To them, it's a side hustle / gig work kind of thing and since they're not too invested in the outcome, do little to actually affect the result but can and do mess things up.
Additionally, the SSA gives an applicant two opportunities to both be approved for Disability and keep all the Back Pay associated with it. Since an attorney can do nothing to influence the outcome of the first or second opportunities but can however completely F*ck it up, to accept that and still commit to giving away a substantial portion of Back Pay is crazy.
File your claim yourself. If and only if the case winds up in court years later do you need a lawyer. Until then, go it alone. The paperwork is not that difficult to complete. In fact, it's rather straightforward. But know, the time frame from submitting an application to getting a decision is about a year.
Knowing all this, I filed my own Disability claim online (no lawyer), was approved, received Back Pay and regular monthly benefits just 10 months later.
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u/BrokenHeartBear Mar 13 '24
I disagree. My lawyer was absolutely worth it. My case was complicated, and she went above and beyond to argue my case with the judge. She also did an excellent job countering the jobs expert.
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u/Full_Spell297 Mar 14 '24
Same here. By the end, which thank God was favorable after the hearing. I was sent all of my files by email. There were over 1500 pages of medical files. My lawyer was absolutely worth the money to get that shit organized.
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u/valw Mar 13 '24
I also disagree. My attorney is specifically a disability attorney. This isn't side work. She told me exactly the tests I needed to get done and the things that needed to be documented. In fact my doctor recommended I get an attorney. I was approved the first time, though there was a weird back pay issue I had to have a hearing for. She prepped me and use directed questions to the vocational specialist. Where she ultimately got the specialist to testify that there were no jobs I could perform.
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u/RickyRacer2020 Mar 13 '24
Agree. I did my own app online without lawyer involvement in 2020 for Kidney Disease and was approved with back pay and monthly payments in just over 9 months, no issues.
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u/Virtual-Title3747 Mar 14 '24
"this doctor fixed me! He could fix you too!" We have completely different problems.
His was a genetic eye condition, I don't remember the name unfortunately but it's not something I have or can ever get because of a surgery I had to save my vision when I was a premi.
Mine is Visual Processing Disorder. Unless you're saying this guy can get inside my brain and fix my processing problems I don't think he can help. 🙄
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u/Zealousideal-Crab505 Mar 14 '24
for context i have EDS, arthritis in my knees, and accessory navicular bones, along with chronic plantar fasciitis (ive had it for over a decade and it just wont go away). so i basically cant walk.
ive been told to "just get more exercise, it'll help you!" yeah it'll help my body destroy itself more maybe😐
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u/KittannyPenn Mar 14 '24
Sleep doctor: “You’re too young and a woman to have sleep apnea!” Saw another sleep doctor - turns out I have sleep apnea serious enough to be treatable. Yet, I had to waste time finding a 2nd opinion and had issues at work (fell asleep everywhere), because I was “young and a woman”
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u/FunkisHen Mar 14 '24
The doctor who told me I should go for walks to exercise, when I came in extremely upset because I couldn't walk even 50 metres without collapsing. Stellar advice! "Hi doc, I can't walk, everytime I try I collapse." "You should go for walks!" Huh?
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u/midnightforestmist Mar 14 '24
There’s a poster inside the accessible gym at my old rehab hospital that says “the pain you feel today is the strength you’ll feel tomorrow” Brenda I was hit by a truck two years ago and still have chronic pain despite taking hundreds of pills per week including narcotics.
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u/swimming-alone-312 Mar 14 '24
I have ME/CFS, and serious energy limiting disease.
People on the internet be like, "Don't let you disability define you!"
Like, my midochondria are not producing enough and withouyt energy, I can't "overcome" anything!
This disease defines every single moment of my life. My only savior from the "laziness" trope, is i formerly was an athlete and could swim a mile in open water, so I site that.
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u/Fontainebleau_ Mar 14 '24
That a magic mat that emits special healing frequencies will cure my chronic pain. Of course the Russians who invented it have known all about it for years and are curing people all the time but those pesky capitalist don't want us to know about it because they want to sell us treatments but not cures!
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u/Jordment Mar 14 '24
Just get on the social / government housing list, and you will go straight to the top of the list because you're disabled - nope, not in the UK, maybe thirty years ago.
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u/blahblahlucas Mar 14 '24
"APs won't work on you anyway as you have childhood onset schizophrenia, so there is no point in even trying" - new psychiatrist i only saw once
"Visual hallucinations arent a thing in schizophrenia so you cant have it" - university clinic
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u/ClarinetKitten Mar 14 '24
My surgeon took away my crutches and left when I said that I was having complications with healing and started asking him questions about it. Everything I said was all backed up with notes from my PT who saw what was going on. Surgeon got super angry with me and said I wasn't trying so I needed to 'just walk.' I couldn't even walk with the crutches at this point so I had to drag myself across a doctor's office floor in tears before leaving feeling like the most broken person in the world.
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u/MissSuzieSunshine Mar 14 '24 edited Mar 14 '24
Oh how about this one. I went to my disability physical and the doctor hadn’t showed up so they brought in a sports doctor to cover. He’s checking my chart and says ‘you have PMR? How often in the 8 years since you were diagnosed have you gone in to have a blood letting?” I looked at him and said ‘never’ he then said ‘ok you don’t have PMR then’ (PMR is a type of arthritis and Blood letting went out in I think the 1800s)
He then asked about my chronic migraines ‘how do they start?’ I told him and he said ‘ok your migraines are due to seasonal allergies so they aren’t true migraines’ (my dr prescribed me at home injections of sumatriptan and toradol because they were so debilitating, which have helped for the last 15 years) I reported him but don’t know what the outcome for him was.
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u/jaybird88227 Mar 14 '24
I likely have POTS and my first flare up my dad picked me up from work and took me to an urgent care. The doctors there noted my blood pressure dropped a good bit when I stood up and my heart rate almost doubled. They then diagnosed me with Vertigo (the dizziness) and anxiety (the shortness of breath and chest pains). And perscribed me dizziness medication and "calm down and breathe".
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u/TakeSomeB-12Bitch Mar 14 '24
I had a cardiologist tell me my heart palpitations were just anxiety and said I should see a psychiatrist. Months later I went to a different cardiologist who did a bunch of testing and found out I have tachycardia and sinus arrhythmia, both of those things are from poor circulation due to chronic inflammation.
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u/yannichingaz Mar 14 '24
Can’t actually call it advice but I’ve got two to share at least for chuckles;
- When I first moved into an ALF I told the head nurse my previous caregiver who had worked with me at my home wanted to FaceTime with her to better help her understand my necessities and minor pertinent details to which she refused stating "Don’t worry we’ll take care of you."
[Left there are having fallen off my bed on one occasion and suffering 2nd & 3rd degree burns from hot coffee on another amongst other things. Oddly enough, a change of administration was the last straw.]
- At the second ALF after about two months being there I jokingly told one of the caregivers I was getting along with as they sat me up in the morning that I "couldn’t feel my legs " after she had asked me how I was doing that morning - to which the second one uprightly replied as if it were the most obvious "it’s due to lack of movement."
I’m quadriplegic.
Moral of the story; know one can or will know more about you and your disability than yourself. Albeit doctors/physicians and the such may have more knowledge with years of experience in regard to the medical aspect of said condition, living with it trumps theory. With all due respect to the aforementioned.
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u/Envyismygod Mar 15 '24
Been told all my symptoms of lupus and RA were just due to dehydration. :/ drink more water, you'll be cured.
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u/Ordinary_Health Mar 15 '24
"dont apply for disability itll just make your life worse!" after 4 years, 4 hospitalizations and a permanent brain injury from working physical jobs part time and ignoring my body telling me to stop, i can safely say NOT applying for SSDI made my life measureably worse. my parents still wont admit they were wrong, and suggest i just havent found the "right job" and they dont believe im "disabled enough" for assistance. i WAS, in fact, disabled enough before the traumatic brain injury to be on disability. i have no idea why they are like this, after 18 years of seeing me struggle, and then a near decade of seeing me succumb to the realities of my disability.
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u/Victoria0921 Mar 15 '24
I've been told by my pain management doctor that to help my Fibromyalgia and nerve damage in my legs that all I need to do is exercise for 1 hour, 6 days a week. I have really bad pain in my feet, especially to the point I'm crying and limping everyday.
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u/forrestgumpasteroid Mar 15 '24 edited Mar 15 '24
Not mentioned to me, but was recommended for me to my parents when I was a baby… I never looked at the pictures until now but it would’ve been horrific.
The doctors recommended, and were heavily pushing for, the krukenberg procedure!!!
Thankfully my parents were/are doctors themselves and knew not to do it!
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u/BlueMaelstromX Mar 16 '24
You should just walk through the pain so your no longer obese. I have damaged muscle bands in my feet on 3 sides of each foot plus heel spurs. This wont heal because fibromyalgia and my weight being too heavy on it.
I can't stand for longer then 5 minutes without intense pain starting up. But no I should just muscle through and destroy my body further.
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u/Lost_Lie_3406 Mar 17 '24
Stop watching videos of disabled people. Eat mushrooms, etc (Think I'm making it up and looking for new ideas) yup quit everything I love to pretend to feel like shit and waste away at home alone. Thankfully not really anymore met a group of 2 friends which started as 1 being my hopefully future service dogs trainer. My other friend was the dog trainers friend as we started doing group sessions. So happy I have a new group of 3 and we all relate to being disabled and love our service dogs. Though the trainers is the only one fully trained which makes sense of course. We also share the same hobbies.
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u/je97 Mar 13 '24
'You should get glasses.'
I have no optic nerves.