Invisible illness takes quite a toll, and yes, its a disability…

I’ve dealt with invisible problems (an auto-immune problem that would flare up once every few months for a few years, but which seems to have finally resolved itself *knocksonwood*, an eating disorder waybackwhen, occasional mild depression). Nothing on the magnitude of some of the comments here, but enough to make me understand what it can be like. I just sort of want to hug you all now after reading these stories!

On the victim-blaming…people have only begun to recognize fibromyalgia as a “real” illness in the past few years. Previously, it was thought to be “nerves” or “all in your head” (as are most ailments that affect women).

And with my headaches – I’m 30. I have suffered from them since I was 21. My mom and grandmother have the same type of headache. I have seen GPs, internists, a neurologist, professional massage therapists – pretty much everyone I can think of. Yet the pain persists. It’s unpredictable, can strike like lightning, and render me nauseous and dizzy in minutes. Every time I have one of these headaches, my boyfriend will say “Why don’t you see a doctor about that?”. And every time I explain that I have seen doctors – multiple doctors – and tried many medications, and Nothing Works. He says “well then try another one – you can’t live like this.” It makes me feel bad, like it’s somehow my fault for not pursuing treatment aggressively enough – even though over the course of years I have tried almost every therapy I’ve heard of, and seen multiple professionals who all shrug their shoulders and say they don’t know. The only thing that has ever really worked is a very strong painkiller + muscle relaxer combo – which I can’t take if I need to drive a car or focus on something.

So, yeah. I guess I do have disabilities. And they suck.

I’m lucky enough to have found pill combinations that work for me, with little trial and error. One thing that grates on me is the constant suggestions on what will make me “better”.

My pills give me a normal, relatively low-pain life. I’m not going to quit them just because you’re a stupid asshole who thinks that gluten is the cause of all health problems ever. Please stop telling me what causes migraines, because I guarantee that I KNOW DAMN WELL BETTER THAN YOU DO.

Also, I could rant for ages about having a female-reproductive system related illness. I don’t know what is worse, being forbidden from seeing a doctor about it as a teen because my mother’s church forbade birth control use and she thought that the doctors would put me on it, or being constantly told that “everyone gets cramps”. Yes, most women do get cramps, but I can guarantee that most women don’t feel like something inside them is exploding whenever their period happens, or pass out from the pain. UGH.

I suffer from (relatively mild) depression, which affects my immune system (ie. I’m out sick A LOT). I’ve been working in my first full-time permanent job this past year and it has become apparent that I can’t go on like this.

Luckily it seems that my employer might be willing to let me reduce my hours (I put it to them as “you’re paying me for time I can’t deliver”) – but it still feels as if I’m “failing” at grown-up life. Even years after my diagnosis there’s still that voice inside me that insists I’m “faking”, “taking the easy way out”. :/

I have a manageable case of epilepsy mostly controlled with medication, but it has always been a struggle to explain to friends/professors/co-workers about the side effects of my medication.

I wish our society didn’t have that stigma that being sick is somehow our fault and not worthy of compassion. I am grateful for this safe space where we all feel open.

And yes @mm and @theorchidthief I guess somewhere in the primitive part of our brain the “you must be doing something wrong” charge must feel like some sort of talisman against bad things happening to you… Also has the bonus effect of getting you to shut up about your problems. :O) Well, now I’m just being morbid, but… strikes me as a little true!

FYI, giving credit where it’s due, the breast cancer awareness movement was inspired by the HIV advocacy movement, which was the first health care issue movement to take its demands to the streets and to the public directly.

And finally, some good news on this issue:
http://www.post-gazette.com/pg/10044/1035678-455.stm