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Blogging Against Disablism Day. Invisible illness – Just because you can’t see it, doesn’t mean it’s not there. May 1, 2011

When I first decided to take part in this I had no idea wha I was going to blog about; but I decided to write about invisible illnesses, something that I know a lot about, living with ME. Not all illnesses or disabilities come with spots, scars, plaster casts or even wheelchairs. Yes a lot of the time people look really ill; but that’s one of the cruelest parts of invisible illnesses, you often look totally normal, 100% healthy, therefore you must be faking – right?

My experience comes from ME, when even at 0% and unable to get out of bed people still told me I looked well. Or the classic, “You don’t look sick.” It’s enough to make your blood boil! I know it doesn’t make sense that I can look so well on the outside, when I feel like my body is falling apart on the inside. It would be easier if the outside matched the inside; but then maybe that would be a little too scary!

When you see me out and about, you haven’t seen the days and weeks of resting I’ve done to be there. Or the hours I will spend asleep as soon as I get home. You also can’t tell I’m in pain or feeling sick with tiredness, because after all these years I’m good at hiding it. A skill I developed because I don’t want the people I love to know just how much I’m suffering. They can’t help, so why should I hurt them more? When you ask me how I am, I’ll tell you I’m alright, because it’s easier than listing all my symptoms and watching you glaze over or ask if I’m depressed – which for the record I’m not. Amazing huh, being this ill and not getting depressed; but at least that’s one thing I have going for me!

I’m not alone though, I’ve talked to people with other conditions like MS, arthritis and Fibromyalgia, who all report the same thing. Even parents of children with learning difficulties have commented that it’s really hard when their child suddenly appears to be “having a tantrum” and the judgments they get from people around them, assuming their child is just badly behaved.

Why is it that people only believe what they can see? We wish we had an outward sign of the physical pain and illness that is going on within us, it would make life so much easier if we could point to something and say “Look, here it is, this is what’s wrong with me”. Or to have to sit and do an injection or take lots of big pills. Even using a wheelchair doesn’t always help. The times you get out, to sit in a chair or when the curb is too high to get up, you get a range of looks from disbelief, to shock. I just want to say “No you’re not witnessing a miracle, not all people in wheelchairs are paralysed”.

I’m not saying that because our illness is invisible that we suffer worse than other people with more accepted conditions. All I’m saying is that there’s a whole extra battle you have to fight, just to find acceptance, from not only family and friends; but the medical profession and even strangers. Oh for a badge to carry around to prove your credentials as a certified ill person, unfortunately like the illnesses, the chips on our shoulders and emotional scars are invisible too.


14 Responses to “Blogging Against Disablism Day. Invisible illness – Just because you can’t see it, doesn’t mean it’s not there.”

  1. DisabledMe? Says:

    Your description of living with an invisible illness was perfect – you totally illustrated the difficulties of this way of life. I have fibromyalgia and I was given a handicap parking permit. I’m just waiting for the day that someone speaks out to me about using it because I don’t look disabled. I think if that happens, I’ll totally loose my mind and go off on that person – I’ve actually been planning that fight since the day I got diagnosed! hahahaha!!

    My blog is http://www.disabledme?.com. I’d love for you to take a look and give me some feedback on what I’ve written (if you have the time and are interested), but I totally understand if you don’t want to. I’m a new writer and I’m interested to know if what I’ve written is any good or helpful.

    I look forward to reading your blog! I’m not sure what ME is, but I’m sure I’ll read your posts and find out more about the condition.

    Wishing you the best of health and happiness!

  2. Selene Says:

    So, so true. I hate the “you don’t look sick,” like you’re going to say “oh, you’re right, turns out I’m fine!” lol

    • Claire Says:

      Lol that’s funny and totally true – what exactly are you supposed to say to that. My bitchy side has come up with a few retorts in my head like “you don’t look stupid/cruel/a complete idiot” never had the guts to say it though, especially as I’d come off as the awful one.

  3. starrlife Says:

    I think that you did a great job speaking to a difficult situation. Unconditional regard is a rarity in todays world and could be well applied to all, not only those who appear to be challenged visibly but everyone. Espousing to the idea that everyone is doing the best they can is helpful to avoid being judgmental of those who we may view as living in a way that is not what they think they should be. Welcome to BADD!

    • Claire Says:

      Thanks for the comment. You’re right it is hard not to judge others; but the sentiment of assuming they’re doing the best they can is important. Sometimes though I wish others could do a bit better – just as they must think of me. It’s a vicious cycle!

  4. […] (More contributions: Claire Wade.) […]

  5. Ruth Says:

    I see my friends who live with fibro go through those extra battles you write about. Very glad you wrote this for BADD.

    • Claire Says:

      Thanks for stopping by, I really appreciate the comment. I can’t believe how many different conditions have the same sort of problems.

  6. NTE Says:

    The whole idea of “looking sick” or having to prove that you are is so frustrating. Good post!

  7. Indigo Jo Says:

    Ricky Buchanan wrote an article about surprising people by moving your legs while in a wheelchair: But Aren’t You Paralysed?

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