When I Have to Explain Intimate Details About My Health to People Trying to Help
Yesterday I did my back. In a nutshell, that means that I bent down to take a sock off, and the small of my back tweaked and pinched, and it was all over. I have Ehlers-Danlos syndrome, which means my tendons and ligaments are extremely fragile, and I hurt them easily and often over nothing. But back pain and back injuries are by no means just an EDS problem, they happen to so many people with all kinds of health issues, so I know I am probably preaching to the choir here.
A couple of months ago I wrote about the exhaustion involved when anyone with chronic health issues constantly has to make themselves extremely vulnerable to the medical world, in order to have any chance of getting help. It is tiring, but it is also overwhelmingly emotional. We constantly have to risk our bodies, our integrity, and our emotions and it is draining.
The last 48 hours have for me been a completely different kind of exhausting and a different kind of vulnerable. I have had to cancel absolutely everything, and people have been wonderful at both understanding and offering help. However, as I can’t even get myself to the bathroom on my own, as I cannot sit on the loo all my own, not everyone is up for that kind of helping and nor do I want them to be! Thankfully my husband has been able to drop everything and stay at home to care for me. Thankfully he is strong enough for me to lean almost all my weight on him as I get to the bathroom and he is strong enough to hold and balance me when I am there.
Who else has to share that kind of story, that kind of intimacy, in order to say thank you but no thank you, for the help? Only people who are in such vulnerable positions.
It has also been a really scary couple of days as I have always known that at any moment any part of my body can “go” and never recover. I already use a crutch or a wheelchair everywhere I go, but I don’t take that freedom for granted. I am so thankful for the independence in my own home that I still have. But as my wrists, elbows, and shoulders are unable to take any weight at all, I cannot get myself in or out of a wheelchair by myself.
When my leg or my wrist or my shoulder goes, it is agony, but I can still get to the toilet on my own. But I now know that when my back goes, I am in real trouble, and I don’t really know what that will mean long term. It is frightening.
We thought of checking in to the local hospital if I still can’t manage before he has to go back to work, but as I appear otherwise strong, when people “help” me, they often pull on my arms or lift my legs up, popping a joint in the process. I am frightened of nurses who don’t know my condition and helpers on airlines who accidentally damage me.
I am exhausted at all the offers and having to explain to people that simply having a wheelchair doesn’t fix anything. That I can’t get from my bed to the wheelchair on my own and I can’t even sit on the loo! I don’t want to eventually have a carer other than my husband; I don’t want to expose my body and my dignity to a bunch of strangers before I find one who can understand and help rather than harm me. I don’t want to have to explain to people all the time that it isn’t just that my back is sore, it’s that everything sucks right now and in ways that could make them feel gross if I tell them enough to understand!
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