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.