nonames said...
Yes I have the same problem.
It is still not that bad while you are able to work and take care of yourself. It is terrifying when you're dependent of people who don't believe you.
This is a tough place to be and I know it well, trust me. This is why I'm desperately trying to ramp up whatever work I can still do to try to regain my independence. Any support and understanding is better than none, with the family I've got left. As for extended family, I rarely if never hear from any of them since I've been sick. The ignorance, lack of knowledge, It's all too familiar, and it is assumed one is just mentally ill, or it's all in their head and they should just snap out of it, to where I've resorted to telling folks at the grocery store I'm autistic lol (well at least that's more socially acceptable! why!)
I may be seen as malingering, lazy. But I've worked so many jobs and ignored my health for so long and never saw a doctor for years and years, and I'm the type of person that usually muscles through, but something in my body has changed, and it doesn't seem to get better.
They just don't understand that.
There's so many different ways of saying it, tick borne illness and people go "oh lyme disease?" and it's just a thing, like sorta a joke that everyone's getting it and it must be no big deal since it's getting more common. And I hate whining about
it, but it's hard to not come off as some low energy complainer and hypochondriac for what this ailment does, and when you have it even sometimes you go, "cmon really? do I really feel this bad and terrible and miserable and in pain right now?? " and then curse the whole darned situation...