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Posts Tagged ‘cynical people’

At the suggestion of a friend of a friend, I posted this to fark.com and reddit.com.

I suppose I shouldn’t be as surprised by the automatic response that it’s probably a scam, though I’ll admit it hurt.

One person suggested a running total – I’ve now raised $1778.70 (the odd bit of change is due to exchange rates on international donations and fees taken by paypal). I had posted on March 31 what I had raised to that point, and I apologize for not having updated since then.

I’m not sure how I can prove that I’m ‘real’. The reason that the call for help comes so early in this journal is a timing coincidence, really.

I started this journal 5 weeks after I finally recieved a diagnosis, mostly because it felt kind of silly trying to give a bit of a view into the life of a person with my disability when I didn’t know for certain what my disability was. It took me a little while to actually accept what is really a horrific diagnosis enough to start writing about it. Can you imagine, at 25, being disabled and knowing that physically speaking, this is as good as it gets?

The reason for this new journal was twofold. First, I wanted a place I could talk frankly about what it was like living with my disability where I wouldn’t need to worry about my ‘real life’ finding it. The field of law is a very insular, tight-knit field. I have already had a “colleague” – a fellow law student – find my personal journal and make a vicious comment in what was a very vulnerable post. Second, I wanted to at least try to do a little bit of educating – about living with a disability, about my particular rare connective tissue disorder, and about disability rights.

One of the most distressing things about becoming a person with a severe disability is the way that it seems as if the world doesn’t ‘get it’ and doesn’t want to. If what I write gets through to people who are healthy, then maybe we can stop having things like the horrible false dichotomy that came up in a conversation with my mother last winter: we should be grateful for complete strangers asking us about our medical history because then we aren’t invisible and ignored.

When we have these ‘invisible illnesses’ – things that leave us looking perfectly fine to a casual observer but in pain, fatigued, plagued by symptoms that make no sense, and even disabled – we are often told that our pain is not real, our symptoms are imaginary, and our disability is just laziness. This, I think, is part of why the suggestion that this is all a scam stung as much as it did. Another case of being told that my life isn’t real.

Edited to add: I figured out how to get wordpress to keep this running total posted on the page where it’s always visible. I’ll try to remember to keep it updated!

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