Be your best Advocate
Sometimes the best self-care is trusting that you know your body and advocating for yourself. A huge challenge for people with invisible illnesses like lupus is that we're constantly being questioned.
Doctors inevitably think we're making up our symptoms. While I was being diagnosed, they sent me to a psychiatrist who told me it was school stress and put me on antidepressants. It wasn't - but many of us are told it's all just in our heads.
Family questions us. If we're juggling a job, surely we must be well enough to keep our houses pristine and not miss any family events? We can't - we use up all our energy trying to work (if we can, that's not always feasible).
Friends question us. We don't look sick. We're not actually in the hospital right now, so are we SURE we can't come to the party for a little while? We're sure - getting ready and going somewhere is often more than we can manage.
BE YOUR BEST ADVOCATE. Insist you know your body. Enforce your boundaries. Explain that you are doing your best and that's all you can do.
It's frustrating. This requires even more energy and time than we have. But if we don't advocate for ourselves, if we don't tell our stories and make people understand, how can anyone else advocate on our behalf when they don't understand our reality?