Normalising disability

[sammason]

If you use a wheelchair or any other equipment for your disability, how do you feel if somebody says you're 'normalising your disability'? If that person calls it an 'achievement' to leave the equipment behind? If that person writes to your doctor with per judgement about you? If that person is a professional employed by the main support

Comments

[meepettemu]

So i should stop taking the medication that lets me function, so that i can 'achieve' something on the one day in a month where i might feel *slightly* less like 'death warmed up'? *laughs derisively*.

That's just horrific. We arent in an age of miracles now (if we ever were). The person who walks with a stick (or a prosthetic) isnt 'normalising' disability, theyre giving themselves the best chance they can at life. And f*ck those who dont get to look on and talk about how 'inspiring' it is to see people struggle on regardless.

We should take away their painkillers and when they get struck with a migraine, point out that theyre 'normalising' migraines. I imagine they would change their minds fairly fast.

[lilacsigil]

Yes, I've been told the same thing, that I should stop "relying on medication" and be more "natural". Sadly, none of the people who said this have offered to slaughter pigs and grind up their thyroids for me.

[sammason]

Is your medication made from genetically-modified bacteria? If so you could hurl that info at the 'natural' brigade.

[lilacsigil]

Sadly no, and radioactive iodine decays quickly so I can't ask them to pop off to Fukushima and grab me some of that if I ever need radiation again...

[cariadwen]

I read about this and wanted to comment, but as phe was very upset, I don't think anything I could have said would have helped

[sabethea]

To be strictly accurate, even 20 years ago some (sensible) doctors considered ME a physical illness. (Having been ill for 22 years, I'm in a position to know! Thankfully, my GP at the time was one of them, otherwise I might have had a much worse experience.)

[meepettemu]

I dont have ME. Ive never had it.

But i do have a friend who was diagnosed with it and cured with the 'lightning cure' (process?). Ive never really questioned ME either way, although the 'cure' mentioned seems... dodgy... to me. But *she* felt her ME was mental rather than physical. Is there a school of thought that suggests that there might be two different things going on?

I wonder how related it is to other 'unexplained' things- my partner has ibs-like symptoms that dont react to any particular food and the drs keep pushing either CBT or psych drugs. I dont believe her symptoms are entirely psychological, although i do believe there's a psychological component to them - stress undoubtedly makes her worse (just as stress often makes my health issues worse), but it's similarly inexplicable (and now an actual psych diagnosis for that very reason!)

[kath_ballantyne]

it probably wasn't ME then. Lightning Process is snake oil. It's expensive and has no proper trials conducted.

Has your partner looked in to Autonomic dysfunction/Dysautomnia? I don't know what their other issues are but it's probably worth looking.
Stress does have a big effect on IBS but it's not always the only thing.

[sammason]

I'm not comfortable with ideas of physical illness being more 'real' than mental illness.

[karalianne]

Neither am I. Except that's how people think of it a lot of the time, especially for mental stuff that affects things like executive functioning but not things like intellectual ability or physical ability (e.g., ADHD, autism, depression, a lot of learning disabilities). These things are real and deserve appropriate treatment, but a lot of people think that they're just people trying to get out of doing stuff, people being lazy, people lying about wanting to do things they never do, etc. etc.

[baratron]

"Normalizing" your disability? That's such a strange comment to make. I mean, surely if you're disabled for any length of time, it should be mentally healthy to accept your disability and stop railing against the things you aren't able to do any more? What's this person trying to say - that you should live every day feeling weird and uncomfortable in your body instead of enjoying your new version of normal

[shehasathree]

I was given some patient literature when I was first diagnosed with Crohn's Disease (autoimmune gastrointestinal disease) in 2000 that said that the optimal attitude for patients to adopt was one of unrealistic optimism. Even as a not-quite-nineteen-year-old, that made me so very angry. Unfortunately, many people around me *did* adopt this attitude and persisted in telling me the story about the friend of a friend of a friend who "only ever had one episode of Ulcerative Colitis and then went completely back to normal!" and acting like i was being negative if i tried to adapt to my increasing disability, and...practical stuff, like, not putting a plan into place for how i should get in touch with my gastroenterologists or other specialists if something did go wrong, and my gastroenterologist refusing to explain the symptoms of various not-uncommon complications to me because "you don't need to worry about that, it probably won't happen".

[baratron]

There are a lot of people who make the mistake of assuming that patients who want knowledge about their condition are pessimistic. It is possible to find out which particular symptoms require an immediate return visit to the specialist without necessarily assuming that you will get them! As a scientist and a geek, I need to know what the worst outcomes are in order to be optimistic. Otherwise I can't relax because I don't know what I'm looking out for.

These people should think about the motto of the Scouts/Guides - "Be prepared". That doesn't mean assuming that the worst will happen, it means knowing what to do if the worst happens. I can be entirely optimistic about my chronic illnesses going into remission while still being prepared for what may happen if they don't.

Bah.

[lakmiseiru]

Yes, yes, yes! It's a sad day when I end up going to the literature and finding that all of these minor things the doctors never mentioned are, haha, known comorbidities/associated factors/symptoms of my chronic medical problem. In some ways, I found it helpful to go to support groups with folks who were in a harder place than I was at the moment - both "I'm not there and that's okay" and "they are there and they are still doing okay" are really, really powerful messages when you see them from people who have *been there* and not just from treatment providers

[rhodielady_47]

I've heard that there were people so clueless but I've never come face-to-face with any