She was misdiagnosed/undiagnosed for 18 years. I was baffled by this, and I myself have spent numerous hours down the rabbit hole of nootropics, and had a DNA test and was researching myself and how things work and how supplements affect your body and such for sometimes 12 hours a day. (Chronically unemployed, chronically ill.)
We got her a DNA test and I went to work researching everything and comparing the possibilities to her symptoms, we tried countless different supplements that could help... And eventually one did, it wasn't a cure but it was a relief she had never felt before. That was Quercetin, which is a mast cell stabilizer. It took about 2 years of research and trial and error to find some relief. We took our findings to the doctor and finally got a referral to an internal medicinist who promptly after hearing the symptoms and what has helped diagnosed her and she was out on a proper mast cell stabilizer. She went from being in bed 20 hours a day to being able to fully enjoy life. (Sadly, without me though!)
I've been dealing with my symptoms for 17 years this year and Quercitin + Zyrtec + Pepcid is the first thing that's made a dent in it. I started a few weeks ago and it's been amazing but I'm not experiencing full relief yet.
This was the combo Claude recommended I start with for a trial, one message after I told it my symptoms. No doctor has ever been able to help.
Health issues can be immensely stressful, and what is required to provide the best logistical and diagnostic support is very different from what is required to be a supportive partner and emotional caregiver. Doctors often fall into the trap of treating the disease and ignoring the patient, but at least that aligns with their job description. It is quite easy to do the same as a partner, and that is NOT the job. For certain personalities, it can often be a massive relief to disappear into searching the web and poring over medical research studies -- the key word there is "disappear". Plus, if someone is suffering physically, you can't really require them to have (what you think is) the "appropriate" amount of gratitude for what you're doing for them. (And physical suffering is always going to lead to mental suffering unless they're a 1000-year old enlightened monk.) You can be quite proud of your savior cred, and your partner can very reasonably tell you to shove that pride up your ass.
It's not about whether you're good enough or not. We all start with woefully naive views of how robust our relationships are. We get together as certain people at a certain time. Living together deepens and widens the basis for the relationship, and we'll all fool ourselves into thinking that nothing can break that apart. But fast forward a decade or two, and upend one or the other of your lives with a health challenge or some major life event, and you'll soon discover that you're in new ground and have to learn a bunch of brand new skills that you never needed before. And there's no particular reason why this person X who you bonded with years ago in environment Y is going to be easier to learn with than some random person off the street now that you're in environment not-Y with a different person X2 who evolved from person X -- just as you've evolved (or devolved) into Me2 from the Me you were. Especially not with the added challenge of a long history together of frictions and irritations that never mattered enough to tip things over the edge but do now in the new environment.
For the record, I'm still married to my X2 in my very-not-Y situation. For now. But I've seen enough that I would never look down on or even be surprised by the dissolution of even the strongest-seeming relationships when a novel challenge comes around.
Back to fairy tales -- Prince Charming's main claim to marriagability was his willingness to make out with a hot living corpse. Are you so sure your own claim is that much superior?
This is overly strong. X2 is likely similar to X and Me2 is similar to Me. X2 is certainly more likely to get along well with Me2 than a random, but far from guaranteed (which proves your point, but I wanted to rein in the pessimism)
Human relationships are brutal sometimes. I still choose to treat others the way I would want to be treated, and some people _actually_ reciprocate, and you eventually learn who is who in your life, but this requires that you be open to the fact the majority won't, and that you will sometimes feel betrayed and used. You just have to accept that it's your decision to make, and decide what kind of person you want to be.
Other commenters are also probably right to one extent or another, the dynamic of the relationship probably changed pretty dramatically and that can create problems regardless.
Anyway, poor old AgentMasterRace probably feels like a depressing episode has turned into something they'd rather it didn't. Sorry for pontificating over your traumatic(?) event with allusions to my own. If I'm reading the meaning of their username correctly though, I feel less bad about it, lol.
There's also HSD, which has a lot of overlap and may yet be a subtype of EDS, but the genetic marker hasn't been found yet. And when you get a patient with the full associated combo of symptoms [0], each of which only reveal themselves or become problematic over a long span of time (e.g. eye problems at young age, period problems / endometriosis as teenager/adult, neurodiverse conditions only diagnosed in 30's, severe joint problems and fatigue in late 30's, etc), few people will actually link them together as possibly having the same single cause.
But thanks to the internet, people with symptom X will find other people with symptom X and before you know it you have a group of people that are like "Hey, we all have symptom X, Y, Z, A, B and C, what gives?".
[0] https://en.wikipedia.org/wiki/Hypermobility_spectrum_disorde...
The real problem is twofold. One is that EDS had historically been a diagnosis of exclusion, and a lot of the diagnostic tests were difficult. The second is that the disorders overwhelmingly affect women, and women tend to get ignored about chronic pain and fatigue.
"You're here for a prolactinoma?" "Nope" "I'd like to get this blood work done tho"
One week later the blood work confirmed her hunch.
Experience can get some crazy results.
I could not tell you the number of doctors who have rolled eyes at the mention of ehlers danlos and hypermobility disorders.