New and feeling imposter syndrome?
Hi! I’ve been thinking about posting for a while now, appreciate all the helpful info I read here 💜
I got diagnosed about a month ago: my official paperwork says mild lupus spectrum disorder, and my rheum called it lupus. But I just feel like…I’m not “sick enough”?
I know that’s silly. I feel fatigued basically every day, I have headaches all the time, I feel the effects of the arthritis in my hands and feet (and I think ultrasounds can’t really lie about that). I’ve been on hydroxychloroquine for about a month now and I feel like that’s been helping with the stiffness and swelling a little in my hands and feet. But reading here and a little of the lupus encyclopedia, I just keep second guessing if it’s really “that bad”?
I have the malar rash according to my rheum (I just thought my redness was due to frequent headaches and overheating, but I hadn’t realize that a rash doesn’t necessarily mean it has to itch, cause it’s not itchy, it’s just got that distinctive shape). I have insanely reactive skin, anything can cause hives or redness; I’ve had some hives and rash popping up recently, not sure if it’s due to the hydroxychloroquine or changing weather or something else.
I’ve often been told I’m a hypochondriac, by my family mostly, so that has me questioning it all, despite trusting and believing in my doctors and medicine and science obviously. I’m also overweight and trying to lose it, so I keep wondering if all these symptoms will go away if I lose the weight and it’ll turn out to have been that all along.
Anyway, I think a lot of that info probably isn’t necessary lol but I had a few questions I’d love to discuss:
- have any of you experienced that feeling of ”not being sick enough”?
- for lupus in a mild state, is there anything you all would recommend to help hopefully keep it that way as long as possible?
I‘m hoping to purchase the lupus encyclopedia so I can read more into the lifestyle part of things, my library loan lapsed before I could finish. I’m also hoping to get The Girlfriend’s Guide to Lupus, not sure if anyone else has read that?
thanks if you read all of this 🫂