Hi Chelle, I think most people with chronic disability will be able to relate to at least some parts of this article, especially how isolating disability is.
Personally, while my disability isn't rare, the stigma attached to it (epilepsy) means it's incredibly difficult to meet up with others simply because anyone who can hide it, will, often out of necessity- employment, accommodation are still at risk. Depending on where in NZ one lives it's possible to never meet someone else in real life with the condition. While I do know people in the real world, like many people with all type of disabilities the internet has been a life saver. The only people in the world who I can talk to are all literally on the other side of the world whom I met initially through overseas forums. Skype is a wonderful invention :)
I've associated with many people over the years who have a variety of disabilities. There's 2 common denominators- at some point depression which is quite logical when you think about it; the other being battles with the health and welfare system, usually over little things that prevent us from improving our quality of life- even obtaining/holding down paid employment or study. There's a disproportionate amount of people with disabilities who are quite capable of working stuck on benefits because the system seems to want it like that.
And so many of us fall through the cracks when it come to getting support- "under 65? No dependants? No mobility problems? (Usually the case with hidden disabilities) Not on our DHB list of "approved" disabilities for home help? Then tough, you're on your own, you won't even get an assessment.
I read your story and know exactly how you're stuck in that rut right now. I'm glad it's not depression, that's just horrible. All the best.