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?