Weirdly, the more bored and resigned I sound about getting a medical thing checked out the more efficiently they check it out. Like, "Hi, I have had 4 pulmonary emboli and I'm having leg pain which is probably not a clot but I'd feel very stupid if it was and I didn't get it checked out."
ER doctor: you mean if I just send you for a leg ultrasound right now and it's clear you'll leave?
Me, picking up my book: yeah, I'm just gonna read until we get it done
Fastest ER visit ever (it was not in fact a clot but I sure would have felt dumb if it had been)
Or, "hey so this test result came back weird and so I think we have to rule out a benign pituitary tumor."
The more specific I get with what I need the faster they order tests. For the RA diagnosis it was, "hey this is probably some weird post viral arthralgia but could we do an arthritis panel since I've got 27 affected joints?"
If the doctor says something dismissive or they don't know, I ask for them to refer me to someone with more expertise in this area.
I had to go through three different practices to find a spinal surgeon who did not tell me that operating on me would be too dangerous because I'm fat. But the third one was like, "Oh, I'm not worried about you coding, there's just a risk that it won't work. But it has a hundred percent failure rate if we don't try."
I did not code. The surgery worked. Was it perfect? No. Did it drastically improve my quality of life? It gave me my fucking life back. I can sit. I can be out in the world and not in blinding pain.
It is so important to not take dismissals and such as the final answer. I got so much bullshit for so many years. It nearly killed me twice, people blowing off clots as muscle pain or "depression".
Track your symptoms. Make a list. Talk about how it affects your quality of life. Ask for physical therapy, ask for second opinions. If you have an idea of what might be wrong, ask them to help you rule it out. Also ask for patient assistance, nonprofit hospitals have it. You might have to go through their labs and their doctors but it can cover an awful lot.
Take a friend with you, or a family member. My pcp asks if I want a chaperone (I don't) but literally having an extra person with you can help.
Being me feels like a full time job sometimes, medically, but no one else is stepping up to it, you know?
