I think that experiencing medicine as an individual is often so bad because we’re statistics in a harm-reduction macro game. I try to remind myself of that at every negative healthcare interaction, and try to advocate for myself more as I age.
You have to advocate. And you have to do your own research. I would be dead if I hadn’t.
You will also be called a hypochondriac at every single stage if you do any of that. By doctors, by family. Everyone. You will be told endlessly that it’s just anxiety.
Family that had been frankly abusive were shocked when I started getting positive results back and responding to treatment.
Some of the issues were genetic.
So several Members of the family that have been dismissing me went and got tested.
They were testing positive for the same conditions and that explained a lot of the weirdness in their life.
Also sad to hear how a lot of my relatives died fairly young in horrible agony from same symptoms But everyone just dismissed it. No one thought that maybe it’s all related.
I could not possibly agree more. You must advocate for yourself and your loved ones. My youngest had the fairly rare kawasaki's disease at 4 months old, she went from sleeping through the night at 10 weeks old to not being able to sleep for more than 45 minutes at a time, fully body rash, red eyes, cranky/irritable, and a 104 degree fever.
A sick visit to our pediatrician's office resulted in us seeing the other practitioner, not ours, who couldn't figure it out. Recommended antipyretics only at that point, took blood. Still in bad shape, a night or two later we went to a children's ER where all the staff spoke to us like we were overly concerned idiot parents. Finally when we returned to our pediatrician and saw our actual doctor, she near instantly recognized it as Kawasaki's and referred us over to NYU for treatment.
Once there, we were admitted to the ER, where my daughter and I stayed the entire night w/o any real help (triage). The following morning after I left and my wife took over, they came to put a line in her and start treatment (intravenous immunoglobulins [IVIg]) but "couldn't put a line in" because she had been "stuck too many times". So they recommended SEDATING HER AND PUTTING A LINE IN THROUGH HER HEART (sorry for the emphasis, I'm still mad). My wife, on little sleep called me to tell me all this and I refused the procedure. I said "no, what you're going to do is get the best phlebotomist at the hospital to put a normal line in her". They argued but eventually got someone and twenty minutes later I got a text saying they put a line in her from my wife. I mean... c'mon.
The following day when I returned there were 3 doctors who were in some way I believe following my daughter's case. One of them insisted on a secondary treatment, the other two said we could go home. I asked the one doctor a series of questions which he effectively dismissed and told me to just do what he was asking. The other two on the other hand answered my questions (e.g):
* if the disease comes back, will it present with the same symptoms
* if the disease comes back, when will it come back, what is the median time
* are their studies on recurrence of the disease
etc. etc. long list I can't remember.
I contacted UC San Diego, where they study Kawasaki's. Read papers, got papers in Japanese which I forwarded over to this pair of doctors who entertained my questions. They translated the papers, read them, told me the findings within.
I took her home that day. I don't deal with medical "professionals" who dismiss you. Glad you didn't either.
In her case, 4+ years later, she’s great. No recurrence. Heart was cleared of any abnormalities which could have been a side effect. Avoided all that by catching it early enough
