How To Deal With This

Hi all, I was diagnosed with lupus back in August 2024 and I never actually learned how to deal with it. I honestly didn’t think it was anything serious because of what everyone was telling me; it’s easily treatable, most people live normally with lupus, etc., but after talking with a coworker about my symptoms (which I didn’t know was being caused by the lupus) recommended this group to me to connect with people who know what I’m going through.

It started out with insanely high liver enzymes (in the thousands if I remember correctly) and some slight discoloration on my back which turned out to be a rash caused by the lupus. I would ignore the issues because I figured it was just regular body pains and the wrong detergent or something until I got the call. I did a small amount of research and accidentally sent myself into a panic. I’ll be honest, I’m terrified. The rash has gotten massive and covers the majority of my back and is now spreading to the top of my shoulders and chest. I don’t know what to do, I skipped my first (and only) follow up appointment because I was so scared of what they were going to tell me. I know most people who have lupus live normally but I’ve heard a lot of stories of people who have a harder time with it. I’m fine for now but I just don’t know what to do if it gets worse. I’m scared, my boyfriend is worried, my family doesn’t know and I don’t have friends I can talk about this with. If anyone would be willing to, please point me in the right direction and maybe give me some support? I don’t like asking for help but I can’t stress my boyfriend out with this more. I’m so anxious that something bad is going to happen on day and everything will start falling apart one by one. Please help.