Saturday, 12 January 2013

Invisible Illness Bingo

I first stumbled across an invisible illness bingo card a few years ago.  No doubt via someone posting it on Facebook - isn't that usually how we stumble across things?

The idea of the bingo card is that it's filled with statements that people with invisible illnesses hear so often that you could no doubt complete your bingo card and shout "house!" in less than a week.  There generally isn't a cash prize in this bingo game though, which really is a shame.

In this post, my general plan (as if I plan these blog posts) is to tell you why I personally find most of these statements fustrating/insulting/stab inducing. There are a few different versions around the internets, and I chose the one above because it was the one I related to the most.  A quick google image search should help you find more if you so wish!

My friend/ex-wife/brother had that but then it turned out he/she was just a hypochondriac.
I started getting this one when I began telling people I had been diagnosed with fibromyalgia.  The most frequent version was the response "isn't that one of those things that they can't prove exists?"/"isn't that one of those things that benefit cheats pretend to have?".  Don't believe people would be so insensitive to someone newly diagnosed with a debilitating condition?  Do me a favour - go to google and type in the words "is fibromyalgia" and see what suggestions you get.  The first time I did it I got "is fibromyalgia real?" and "is fibromyalgia a mental illness?".

But you don't look sick!
Ah, the good old "you don't fit with the image of a person with a disability in my head, therefore you must be faking".  I don't look sick generally, not with three inches of makeup on my face.  To the casual observer I look like a normal twenty something.  It doesn't mean my disabilities aren't real.

'But you don't look sick' is the name of the website of Chistine Miserandino who wrote The Spoon Theory - for this very reason.

If I haven't heard of it, then it doesn't exist!
Worryingly, I tend to get this attitude most often from healthcare professionals who think I'm making up the whole jaw arthritis thing because they've never heard of anyone having it.  Hello?  Is it a joint?  Then it can get arthritis just like any other joint!  Obviously, I'm just a silly little girl who occasionally gets a headache and has read about this on the internet, so I've decided I've got it. Obviously.

I generally manage to snap them out of it when I show them the scar from when I got my right jaw joint replaced/they see my numerous MRI scans/they realise I've accidentally memorised my CHI number because I use it so often.

You just want an excuse to be lazy and have people feel sorry for you!
I hate how easily I get tired out, or how quickly I can get sore doing 'normal' things.  Sometimes I spend an entire day doing nothing other than catching up with the sleep I haven't had all that week because I've been in too much pain.  My catholic guilt means that I feel ridiculously guilty on these days that I haven't done anything 'useful'.  As for the feeling sorry for me part - I hate it.  If I'm going through a rough patch/flare I will actively avoid answering my phone (which annoys my family to no end) because sometimes I'm just not up to either lying and saying I'm fine, or talking about how bad I'm feeling because it's really not a fun thing to talk about.

You have it so much better than some people!  Think of the starving children all over the world!  They don't have problems like this!
I think this is my least favourite.  I get it quite often, generally not with starving children but with a comparison to someone who has severe disabilities.  I honestly don't know what people are hoping to achieve with this one?  Any ideas?  When I hear this it doesn't make me feel better about my issues, it just makes me feel guilty that someone else is suffering.  It makes me feel like a crappy person for daring to mention my issues when anyone else in the world might be suffering a bit more.  Saying this kind of thing is likely to make me never open up to you ever again.

On a vaguely-related-but-not-really note, a few years back I saw Morrissey live.  At the time I was at the end of my tether with my jaw and my head felt like it was constantly in a vice.  Morrissey came out on stage and the first words he bellowed were "SOMETHING IS SQUEEZING MY SKUUUULL!" and then launched into the song of the same name:

Now Morrissey is clearly a man that understands suffering and this song became known (between me and my boyfriend) as the official sponsor of my arthritis and was the anthem of my  joint replacement.  The fact that Morrissey expresses that he would love to not have to take any more pills in this song, along with it being his first words in my home town clearly proves to me that this song was definitely written about me.