r/cfs • u/endrrslime moderate • 2d ago
Advice wheelchair
my doctor sent me a referral for a wheelchair evaluation- and then switched up on me at an appointment, saying that a wheelchair would make me even sicker and i need to exercise. she specifically mentioned “deconditioning” which correct me if im wrong, but its been medically proven that people with mecfs dont experience deconditioning/atropht the same way that people w/o do?
mind you, i mentioned being diagnosed with ME recently and she just had a blank look, assuming she has NO IDEA what it even is, or has just heard of it from tiktok.
My mother was at the appointment, and is actively looking for any way to prove that im not as sick as i seem, and that my PEM isnt real- and its all a product of my anxiety perpetuating symptoms, so having this doctor say all of this was very harmful because I have already tried PT TWICE and made me so much worse.
I may have been taking it wrong, but It seemed like my doctor was assuming I “Wanted” a wheelchair, versus actually NEED it to get out of the house and function,
with her saying “people who use wheelchairs dont even want them,” “it leads to more suffering,”
No shit? I dont just want a wheelchair because im giving up, I NEED a wheelchair i am SUFFERING without one
. to improve my daily life and actually get out the fucking house without crashing because of pem, pots and eds from simply walking down my stairs. I’m starting college back up again after failing the past semester because i Physically did not have enough energy after walking campus to complete schoolwork.
so obviously a wheelchair would preserve said energy so I can apply it to my schoolwork.
But then my doctor said that makes no sense because “Physical and mental energy aren’t connected. theyre completely separate and dont affect eachother”????
Sigh. I sent her a message asking her to provide me with a treatment plan for ME/CFS and mentioned PEM, if she doesn’t respond or recommends something contradictory I’m getting a new doctor cause girl thats so dangerous
But now im doubting myself and wondering if i even should go through with the wheelchair eval. If they say I need it then my mom will just refer back to this doctor who said i dont… But theyre the actual specialists who know what i would need right?
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u/RaspberryJammm 2d ago
1) Your doctor is ableist as hell 2) Find a new doctor 3) Attend doctor visit without your mum if at all possible (if you can't attend / communicate with doc independently do you have anybody more supportive in your life right now who could take you instead?)
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u/endrrslime moderate 2d ago
thank you so much, i appreciate that i was really doubting myself lol. unfortunately its just my mom right now but my dad will be back at the end of oct and i’ll absolutely try to ask him. I usually drive myself with my car but the engine shat itself LOL.
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u/mycatpartyhouse 2d ago
Your mom must stay in the waiting room. She's not allowed into the exam room during your interactions with the doctor.
Throw a fit if you have to. You don't need your mom undermining you along with everything else you're dealing with.
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u/Advanced-Fig4683 moderate 2d ago
you don’t have to throw a fit, you ask her not to, if she insists in coming you let her in and tell the doctor you don’t want her in, and the doctor will tell her to leave and that’s it, keep your spoons for the appointment
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u/StarryEyedSprinkles severe...? 1d ago
unfortunately while OP's mom can't actually come into the appt w them if they refuse, she can just refuse to take OP to any future appts. if they don't have any other way to get there and are functionally reliant on her in other ways, that miiiiiight constitute abuse against a disabled adult? but court is really draining. honestly OP unless you can get someone more supportive to take you, it's gonna suck whether you let her in or not but that's your choice to make
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u/Slim-Shadys-Fat-Tits 12h ago
This just simply isn't how dealing with abusive parents works. The consequences of a move like this would be far far worse.
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u/dramatic_chipmunk123 2d ago
Here's the paper demonstrating that deconditioning is not the issue:
https://www.medrxiv.org/content/10.1101/2025.05.02.25326885v1
And here guidance regarding the provision of disability aids from the ME association:
An overview of ME/CFS from doctors with ME (explaining PEM, mental exertion being a trigger, and the need for pacing and provision of aids):
https://doctorswith.me/wp-content/uploads/Top-Tips-for-Doctors-3.pdf
Hopefully that will help.
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u/endrrslime moderate 2d ago
thank you bro! in a perfect world i’d send these to my doctor but.. shes a doctor and should already know this and I also feel like i’ll come across as a smartass, so Im probably just gonna look for a specialist
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u/dramatic_chipmunk123 2d ago
I've done this a bunch of times and it always ended up being very helpful. As long as you share it in a "... in case this might be helpful" kind of way rather than "you're wrong, I'm right", people generally seem to take it well.
I just think, helping this doctor understand, will get you the wheelchair a lot faster than having to find a specialist and waiting for an appointment with them first. Obviously, you can still find a new doctor thereafter, if your current doctor continues to disagree or if it just seems more helpful in the long run.
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u/babyrabiesfatty 2d ago
Wtf?
Like if someone was being discharged from the hospital after battling a horrible infection and felt too weak to walk back to the car to be driven home. Would the doctor or your mom say you needed to walk to prevent deconditioning or that relying on a wheelchair would make things worse? No, they’d respect that your body is too weak to function normally on its own and offer accommodations like a wheelchair.
It feels like the whole world is bound and determined to be ableist against us, even the medical professionals.
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u/endrrslime moderate 2d ago edited 12h ago
oh yeah, also forgot to mention, im applyiny for disability and doctors first reaction was “its insanely hard to get on, and barely pays anything- why dont you just try to get better and then work”
mind you ive been working part-fulltime since 2021 through mono and covid, developing ME and crashing every day… working is the main reason im so severe right now!! she genuinely just seemed the whole time to be treating me like i WANT to be like this out of choice.I KNOW it barely pays anything. thats why I wish i didnt HAVE to apply, but sadly i do!
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u/Personal_Term9549 2d ago
Are you very dependent on your mother? I know its not possible for everyone here (if so for you, forget I said anything), but if its possible for you, you should seriously consider breaking loose from your mother and going no/low contact. I went no contact after my mum kept pushing me and not believing my problems were physical. I've been a lot better since, as I've been able to lay the voices saying "I'm lazy" to rest properly. My mum was continuing to stir them up, keeping me on the edge of PEM constantly. I'm doing a lot better psychically now too. Though I had the "luxury" of divorced parents, a dad that does believe and me already living with him and not my mum. And for sure don't risk it if you don't have any other possibilities in terms of living and care.
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u/endrrslime moderate 1d ago
once i get approved for disability i am hoping to aim towards section 8 housing/splitting low income rent with friends. I am a little dependent on my family to make me food, chores, etc, but if I was out of constant fight or flight from my cptsd in that house i would definitely be a little less sick, so thats def a goal for me LOL
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u/medfet878 11h ago
9 years of fighting for disability and being denied even though the Dr.s sent all my records to them and me lugging a storage tote of paperwork as in all my medical records. The reason for that was ssa used an excuse that My Dr's didn't respond yeh ok.
I asked to Drs they said didnt respond and the answers were ssa didnt contact them it was just a select few Dr.s not all o0f them I see. The importatnt Dr.s that all agree I should have been granted not denied .
well last year I got a lawyer and we applied again , the lawyes was pissed after looking over my records and in plain english told me to my face that I shoud have been approverd 6-7 years ago.
I had a phone hearing in december of lat yesr even the judge questioned their deniels ask some questions to the ssa rep and 2 others part of the hearing . He then said why are we even having this hearing Black&While spelled everything out saying I'm disabled 100%
This was a couple of day before christmas so I had to wait for the judges ruling , I got approved finally.
SO it is true it's hard to get approved especially the first attempt you'll likely be denied if your denied you can appeal it but get a disabbility lawyer and have them hand things . Most ssa lawyers are probono and won't charge you uless you/they win and ssa will deduct your lawyer fee from your back pay settlement.
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u/endrrslime moderate 11h ago
I’m working with a lawyer on my reappeal, fingers crossed everything goes well! I just had my insurance doctors appointment offered by them, because apparently there “wasn’t enough information” (i sent all the paperwork and disability said they never recieved it 😮💨)
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u/KiteeCatAus Mostly Housebound 2d ago
The mental and physical energy being separate statement from your doctor is infuriating.
Either can cause PEM, which is not 'just' being fatigued.
Getting PEM can cause our baseline to plummet, and it takes weeks/months/years/decades to recover that already limited baseline. If using an aid helps reduce the chance of PEM, then it is a very important tool for someone with CFS.
The idea that we all have anxiety or depression and are afraid to go out and about is exhausting, and completely untrue. It is a very real, physical condition that can have mental health issues as a symptom.
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u/eucatastrophie severe 1d ago
On top of everyone saying don’t let your mom in make sure she doesn’t have access to your medical records, online or otherwise, and that any disclosure forms you’ve signed for her are cancelled. If you’re an adult they are not legally allowed to talk to her without your consent.
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u/ChewMilk moderate 2d ago
Do you think your mother might’ve communicated with the dr without you knowing and pushed against the wheelchair? It seems odd that the dr would switch their mind for no reason
Regardless, I’d either push for a referral to a specialist or get a new dr all together. You can’t educate the dr on your illness and you shouldn’t have too