But you don’t look sick

Everybody knows that there are visible and invisible chronic illnesses and disabilities. And then there’s the big messy grey area in the middle. EDS can be both visible and invisible and it may be glaringly obvious or extremely subtle. It makes it hard to fit into people’s mindsets.

We went to the library on Saturday and after Tuesday’s fall, had to take the wheelchair. It’s great that staff are trained on dealing with people with disabilities, its not so great that common sense seem to not apply post-training. We went up to the counter, Chris said hello, opened his bag and started to unpack books. I hung back to wait. He had books to return. I didn’t. The friendly librarian completely ignored him, looked at me and talked to me. I smiled back with a hello and said that I’m just waiting, Chris is here to get some books. It annoyed me. To be fair to the gentleman in question, Chris was pushing the ‘chair as we came in, but not by the time we made it to the desk. I don’t understand why it makes such a difference to people. You’d think with wheelchairs having been around for decades people would stop staring at it as if it were a space ship. Or  why it seems to be the norm to either ignore the person in the wheelchair or fixate on them to the exclusion of everybody else.  I grew up around someone with quadriplegia and so wheelchairs have been part of my concept of the world from my first memories. Maybe that’s why I find it so hard to understand why people react the way that most people do.

Invisible symptoms are sometimes even harder to explain in a social context. It’s impossible to go about your day and live your life if people are under the impression that you’re either healthy, faking it or grocely exagerating your health problems. I get head splitting migraine headaches that are chronic and doesn’t respond to any treatment. I get asthma attacks that require adrenalin shots and friendly paramedics to make it better. I have joints that dislocate very easily and the pain that level of generalised instability creates is impossible to translate into words. I don’t quantify suffering and hope that I will never be guilty of even thinking that my situation is worse than anybody elses, particularly as I will never know what their situation is. I have always tried to understand other people’s suffering and problems in their context, not in mine. All I ask is that people do the same. Don’t say “I have headaches too” or “I have asthma too” or “I have joint pain too” as if that somehow makes us the same. I do appreciate it immensely when a fellow migraineur gets in touch and we can chat about shared experiences, but when a work colleague who is perfectly healthy and never misses a day off work and never complains finds me on the bathroom floor semi-comatose after a bad headache hit unexpectedly and says ‘I have a headache too, from eye strain, here’s some aspirin it always cures mine right away’, it’s annoying. Saying ‘I’m allergic to aspirin’ somehow just doesn’t cover it.

EDS is a collection of weirdness and oddness and exceptions-to-the-rule. It’s variable, it’s visible but not, invisible but not and doesn’t conform to general expectation. It makes it difficult to  explain and difficult to understand. It’s the unpredictability of EDS that’s one of the most difficult aspects to live with. I remember watching a very over-dramatised American television clip about a family with EDS and towards the end of the clip there is a shot of the family getting into their car with a wheelchair in the back and the commentater stating that they travel with a wheelchair, but don’t know who may need it or when. We travel with splints, crutches and a wheelchair, but it’s when Chris empties his pockets to find his wallet and pulls out a couple of Epi-Pens, it gets my attention. Dislocating joints are awful, not knowing when I won’t be able to breathe is worse. Invisible illnesses and symptoms are easy to dismiss, but that doesn’t make them any less serious or debilitating to live with.


6 thoughts on “But you don’t look sick

  1. Hello Lileia!
    I just wanted to let you know that this post really reached out to me. I am 19 years old and have HMS, and my rheumatologist is testing me and looking into the possibility that I might have a more complex connective tissue order, thanks to my frequent dislocations and subluxations, as well as a few other signs (scarring, doughy, stretchy skin… all that jazz, haha!) I also have a form of autoimmune hepatitis.

    While your challenges sound *so* much greater than mine, I can understand the frustrations in dealing with ignorant people on a daily basis. Invisible symptoms can be so hard to deal with, and people just don’t understand, or think you are being a “crybaby” and just need to “toughen up”. Or even worse, when they give you “medical advice”, like “Maybe if you got some exercise”, or “Maybe you’ll grow out of it.”

    People can really be a bother sometime, especially when they realize their commentary isn’t necessary. It just makes us feel worse!

    I just wanted to let you know, as a fellow female gamer and person with a chronic illness, that I find people awfully frustrating sometimes, too. :)

    I’d offer hugs, but we might end up subluxing a shoulder in the process, haha!

    Take care and keep blogging!

  2. Whenever I get frustrated with people not getting it, I try to remind myself is that the reason why they’re not getting it is because they haven’t been where I am or known someone like me or something about it. And my personal experiences with chronic illness and disability I wouldn’t wish on anybody, even if it means more understanding for me. Also, there are lots of things that I don’t have personal experience or knowledge of and I’m sure I have caused other people the same frustration with my ignorance.

    Good luck on your journey with chronic illness and I’m definitely not offering hugs or a handshake today, maybe just an understanding nod or bow to a fellow female gamer that gets it. :)

  3. Hey there,

    You are such an awesome writer. I am fortunate enough to be in fairly good health, but my best friend broke his neck a couple years ago and is an incomplete quadriplegic. He moves about in an electric wheelchair and does just fine for himself, but I get so angry with the way people treat him when we go places. They either talk to me as though he is mentally retarded as well, or they adopt a sort of head-patting patronizing attitude (middle-aged women are especially guilty of this).

    A memory that sticks with me is going out one
    Anyways, I just wanted to let you know that your blog is meaningful to people with disabilities AND those who have a disabled person in their lives!

  4. Thank you, it means a lot that my chaotic ramblings are meaningful and definitely bah for not posting everything you’ve written. And yes, middle aged women are the worst. Assistance, if offered first and accepted is one thing, taking over is quite another. Middle-ages women have a tendency to the latter, but look who is guilty of stereotyping now :)

  5. Wonderful post! I am the founder of National Invisible Chronic Illness Invisible Week at http://www.invisibleillness.com . We have lots of articles, we’re accepting guest bloggers and I would love for you to consider submitting a blog post for publication on our site. Sept 14-18 we will be having our 5 day virtual conference online with 20 guest seminars. I hope you will join us and of course, if there is any way you can let others know we appreciate it too! It’s people like you who make the difference it spreading the word.

    I am 40 and have had rheumatoid arthritis since the age of 24. I also have had FM about 13 years. I know how hard it is to get through each day. My passion is Rest Ministries (which is a Christian organization that serves the chronically ill, http://www.restministries.org and Invisible Illness Week. That gets me up on mornings I’d rather stay in bed.


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