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.
I don’t have any personal experience. But finding other people who you can talk to is a good idea. Maybe the internet can connect you. A quick google yielded the following result: https://www.lupus.org/resources/find-support-near-you
And maybe a local support group can offer something of value. And it seems to be one of the diseases with symptoms that vary widely in how severe they are.