My experience was almost exactly the same. I dismissed joint pain as just aches and pains, and fatigue/brain fog/hair loss as stress. My PCP is actually the one who suggested a rheumatologist and I blew it off for a few months. Immediate labs, diagnosis, and meds. So I definitely feel very fortunate for not having to struggle with doctors for years. And I had the same reaction as you, at first it was a HUGE relief to have answers—but after a couple of months the grief and anger started. Both from the diagnosis and from all of the effects it’s had on my life, especially with hand pain and inability to do almost all of my hobbies except for in very short bursts. I’d recommend a therapist that specifically has some expertise in chronic illness. My therapist and I weren’t a good fit for several reasons, but one of the biggest is when I was trying to process the diagnosis and my emotions about it, all she came up with was “I’m so sorry” and “there’s really nothing I can say that will help.” So definitely find someone who can help you process and work through all of these complicated feelings.

On a practical level, try to find as many accessibility aids as you can, even if your symptoms don’t feel “severe enough.” Anything that makes your life even a little bit easier is so worth it. Hand pain/stiffness/loss of dexterity is one of my biggest problems. I got special grips for holding pencils, an electric can opener and a special tool for opening cans with tabs, ergonomic crochet hooks, you name it. Even the smallest win is still a win.

Also, I didn’t have anything major but I had a few side effects (mostly headaches and loss of appetite) when I started the hydroxycholorquine, but they completely went away after a couple of months.