this post was submitted on 22 Sep 2024
17 points (90.5% liked)

Chronic Illness

243 readers
25 users here now

A community/support group for chronically ill people. While anyone is welcome, our number one priority is keeping this a safe space for chronically ill people.

This is a support group, not a place for people to spout their opinions on disability.

Rules

  1. Be excellent to each other

  2. Absolutely no ableism. This includes harmful stereotypes: lazy/freeloaders etc

  3. No quackery. Does an up-to date major review in a big journal or a major government guideline come to the conclusion you’re claiming is fact? No? Then don’t claim it’s fact. This applies to potential treatments and disease mechanisms.

  4. No denialism or minimisation This applies challenges faced by chronically ill people.

  5. No psychosomatising psychosomatisation is a tool used by insurance companies and governments to blame physical illnesses on mental problems, and thereby saving money by not paying benefits. There is no concrete proof psychosomatic or functional disease exists with the vast majority of historical diagnoses turning out to be biomedical illnesses medicine has not discovered yet. Psychosomatics is rooted in misogyny, and consisted up until very recently of blaming women’s health complaints on “hysteria”.

Did your post/comment get removed? Before arguing with moderators consider that the goal of this community is to provide a safe space for people suffering from chronic illness. Moderation may be heavy handed at times. If you don’t like that, find or create another community that prioritises something else.

founded 4 months ago
MODERATORS
mecfs
[email protected]
[email protected]
[email protected]
17
What is your approach to medical appointments for chronic illness if you are a medical professional yourself? (Or if you have a very good understanding of your disease) (midwest.social)
submitted 1 month ago by [email protected] to c/chronicillness
2 comments fedilink hide all child comments
 

I'm currently a medical student and a licensed EMT with a chunk of professional experience in medicine as well as having multiple chronic illnesses, a couple of which are very stigmatized. I've kind of settled into conducting my appointments like I'm presenting a patient to an attending physician. I still use I/me/my/mine and describe things from my perspective, but it's still a rather....professional(?) discussion. I feel like it helps me approach the conversation in a productive way, and my physicians seem pretty receptive to my suggestions for treatment and testing...but it also feels like I'm dehumanizing myself a bit.

The biggest issue I've had tends to be with nurses/NPs/admin/etc when I call and say "hey, I'm having these weird symptoms and I think this is the diagnosis, can you get me in to see the physician?" and they sort of short-circuit almost because they seem to be in the habit of exerting their own judgement about a situation.

I recently had a nurse try to punt me back to my primary care physician because the specialist was out of the office and she wouldn't escalate to the physician on-call because she didn't understand that I had already talked to my primary care physician and she said she wasn't equipped to deal with it. (This was an issue that has the potential to be life-threatening in a matter of days that, fortunately, I knew how to kinda sorta manage on my own for a little bit.)

you are viewing a single comment's thread
view the rest of the comments
[–] [email protected] 7 points 1 month ago* (last edited 1 month ago)

Honestly. I’ve found nearly every medical professional hates when you know more than them about your disease. In my experience it sort of makes them treat you worse. So I tend to try and steer things into the way I want them without being explicit if you know what I mean.

Say I want to try low dose naltrexone (which is a cheap non-patented drug, that has minimal side effects and may help a few autoimmune diseases, research is mixed, and since there’s no patent no one is bothering to actually conduct large trials).

Instead of asking if I can try the drug. I’ll ask the doctor if they’ve heard of it, what they think of it. Then say I have the kind of symptoms the drug helps. I guide them towards what I want instead of saying it explicitly. Because for some reason, saying it explicitly seems to raise red flags and you never get what you want.

But yeah I have a stigmatised disease that was psychologised for decades and doctors treat you horribly in general when you have it so maybe I need to resort to measures that others might not need to.