I got a diagnosis today after trying to figure out what’s wrong with me for twenty years. My grandmother died at a relatively young age of lupus complications and she had to end her whole career at 36 because she was so sick. I’m 27, and I am terrified I’m going to end up like her. Her quality of life was absolutely awful for the entire time I knew her. I don’t want that for myself.
First off, your rheumatologist is the most important doctor you will be dealing with. For some reason the field collects some odd ones with poor people skills. You may get lucky and find a good one right off the bat. However if the doctor seems to not be listening to you, understanding and explaining your symptoms, go for a second opinion or a third or a fourth opinion. It took my wife 5 different ones to finally find a good one. It’s a 3 hour one waytrip to see him but it’s worth it. We will likely be moving up closer to him in a few years.
Second be patient with the meds. It will likely take several tries to find something that works. However not too patient, waiting too long can make the disease progress further. However once the right cocktail is found you’ll feel a bunch better, until you don’t. Changing meds is common and normal no matter how long you have it.
Last, if your in the U.S. and have to deal with our shitty system, get ready to fight insurance. It will be a constant battle if you geton one of the criminally prices drugs. Just don’t give up and eventually you will win. One drug refill took my 2 months of twice weekly calls to push it through.