I read somewhere that the average time before diagnosis of POTS is 5 years, and people need to see 7 different medical professionals. I'm sure CFS and Fibro and other chronic illness are similar, or even worse.
Every person I've met with chronic illness has been mistrustful of the medical system, and for good reason. They've been told their symptoms are "psychosomatic", depression, anxiety, laziness, deconditioning, etc… Gaslighting and poor treatment seems to be the norm. I wouldn't be surprised if most people in our situation have medical trauma; being defined as: "psychological or emotional symptoms associated with negative medical experiences."
I know that, personally, I hate going to doctors, especially new ones.
- I expect it to go poorly.
- I don't feel like they will believe me about my symptoms, or they will ignore what I say.
- I don't trust that they even know anything about my conditions or their treatments.
- Often the treatments given to me are actively harmful.
- If I disagree with them on anything, it turns into an argument.
The worst part is, I'm usually correct. I'm not sure you can even classify it as trauma, because that implies it's not continuing to happen. If anything, it's a wise adaptation to be wary.
You might argue that everyday family doctors aren't equipped to treat us. Often I'm treated like a hot potato, tossed between specialists because I'm nobody's problem. There is a huge gap in the medical field for knowledge about chronic health conditions. The analogy that stuck with me was: "they can set a broken bone, but they can't help my arthritis."
What do you guys think?
6 Comments
Eeyore_Syndrome@sh.itjust.works · 6 pts · 15d
I was seeing a neurologist for bad scoop-my-eyes-out-with-a-spoon migraines.
And along the way got Fibro.
Neurologist did test me for like everything... 3 MRIs.
Good news it isn't MS. Or Brain cancer. Or a slipped/compressed disc.
Then got ghosted when Covid happened.
Was only a gabapentin Rx filler anyway after that point.
Now my Rhumo just fills my Bacolofen Rx. (yes that's a MS med lol.)
I'm still in pain all the time and want to die. Oh well. 🥹
phanto@lemmy.ca · 2 pts · 15d
I was twenty six months of migraines. Never got a diagnosis. I just got better over a week all of a sudden. Four triptans (nausea on one), gabapentin (did nothing), indomethacin (confusion, nausea), maxeran (induced panic attacks), candesartan (nothing), Botox (fainting, sort of helpful but diminishing returns and $$$$), propranolol (nausea), topiramate (nothing), CBD/THC (hallucinations, no pain relief), and one other that I forget the name of. Orange tinted glasses kind of helped.
bjoern_tantau@swg-empire.de · 4 pts · 15d
Yeah, I definitely have that. But as you do with good reason.
Our medical system is built to handle common cases that can be diagnosed and treated in less than 15 minutes.
I've entered a Long Covid study where I will apparently be visited by half a dozen "experts" to see if that will help. My wife and I are already apprehensive about this and poised to kick anyone out of the house who doesn't seem to know their shit and wants to prescribe harmful treatments.
The game You're just imagining it perfectly captures the whole experience.
Zarobi@aussie.zone · 3 pts · 15d
Interesting looking game, thanks! I'll give it a go tomorrow.
I have ME/CFS but not from COVID… I got it 25 years ago after a nasty case of EBV / Mono / Glandular Fever. I actually was a bit hopeful that after all the attention from COVID, I would be able to get better treatment. A whole bunch of clinics and resources opened up, after all.
All the clinics and resources I called said they only support long COVID. Same symptoms, same disease, but I'm barred treatment due to politics. That actually made me quite depressed for a while. I considered lying, but decided against it.
bjoern_tantau@swg-empire.de · 4 pts · 15d
Yeah, I actually hate that my GP is calling my issue Long Covid instead of ME. But I guess that opens me up to more options.
I'm even convinced that I had mild ME before Long Covid. But my old doctor didn't believe in that and I didn't know any better.
chunes@lemmy.world · 2 pts · 15d
Not just treatments, either. Diagnostics. And then they act like it's no big deal when one puts you in the hospital for a week? Like............????