As someone with a fairly unusual chronic illness, I’m always having to explain my illness to people. It would make my life so much easier if people who are interested enough to ask me about it could push that little bit further and google it themselves – but they won’t because in all honesty, unless it’s messing up your life, why would you? So I sometimes post humorous memes that I find about my condition on my Facebook and Twitter page. Maybe they will mention dislocations or fatigue – they are digestible little nuggets of Ehlers-Danlos info. The only problem with this is that people think that my illness comes in digestible little nuggets, sometimes with adorable cats. They don’t understand that it’s all the time and it’s like trying to digest a bottle of bleach. Even if there were cats, I’m allergic to them, along with being allergic to the entire fucking universe because that’s just a part of my being sick.
Even if they get their head around subluxations, they don’t realise that it’s several joints, every day. And even if they do understand that, they still don’t understand that all of my muscles have to work ten times as hard as a healthy person because they have to stop my joints constantly dislocating causing me to ache literally from head to toe, 24/7. Every morning I wake up feeling like I climbed Everest the day before, with my shoulder having tried to slip out of its socket and suffocate me as I sleep. That’s what I’m dealing with every day and when you see me looking “fine” in the supermarket, that’s what I’m dealing with then too. I’m probably going home to cry and the act of going to buy the food has almost certainly left me too sore and exhausted to actually cook the food.
I think that often people confuse me trying to have a life despite the pain as me being better and not having pain. When I meet someone for a coffee or a beer, it’s because I’m having a better day and deem it to be worth the consequences. Sometimes the consequences will be three days of struggling to move between my bed, the couch and the bathroom. Sometimes it’ll be excruciating back or shoulder pain or days of acid reflux and IBS running me into the ground. Any activity always comes with a side order of musculoskeletal pain. Sometimes it’s just really damn difficult to try and sit like a normal person and have a normal conversation when you’re in the sort of pain that most people seek emergency treatment for.
This leads me to why I don’t seek emergency treatment. And it’s really quite simple. My pain is not an emergency. Yes, it’s the same pain level as when you dislocate or sprain a joint but I know mine isn’t broken and that it will slowly heal. The hospital can’t give me any pain killers due to my allergies and generally when they admit me, they do more harm than good – so I stay at home. But please do not mistake this for meaning that I am not in severe pain.
It’s nice when people comment that it’s great that I’m still positive and smiling and keeping going. It’s all due to 27 years of chronic happy face, as we call it. I want to say “thanks, I didn’t think you wanted to hear about how 24 hours ago I was considering taking my own life, so I’m smiling and telling you the good bits” but what I actually say is “thanks, J isn’t too keen on the other option!” because it’s easier to joke about it than for me to explain that looking okay does not mean I am managing, at all.
I guess people will only ever see what they want to see, regardless of what is in front of them. It’s just frustrating when in one week you will explain to someone that your hands and shoulders are so fucked that you struggle to hold a book open… but then they will suggest an evening of bowling the next week. Sometimes I wonder if they think I’m faking it or something. If your pal Dave dislocated his shoulder, would you invite him bowling? Probably not. But people understand Dave’s pain. Just because people don’t know about my illness, they assume it is like a meme and goes away when I’m not directly complaining about it. It doesn’t. My hands and shoulders are far, far too mangled to go bowling.