You wouldn’t think a condition of which the main symptoms are skin issues, including abnormal scarring, and joint issues, most notably joint dislocations could be invisible. Most people conjure up images of traumatic dislocations, the guy who dislocated his shoulder playing rugby, the knee dislocation in the car accident, i.e. knee vs dashboard, the finger slammed in a door, motorbike accidents, stuff like that. Dislocations with EDS are nothing like that. They’re easily missed. There’s no blood, no crushed tissue, no extreme swelling and more often than not, bone displacement is not all that obvious unless you can see my skin and I cover up very well. I also have the atypical pleasure of smaller joints being more affected than larger joints; fingers, wrists, toes, ankles, spine, jaw is first in line; then shoulders, hips, knees and elbows. It’s much less impressive dislocating a toe than it is dislocating a hip. The other issues are even less visible, but no less debilitating.
I value my privacy. The more help you need, the less privacy you have. People wander in and out whilst you’re getting dressed, breastfeeding, having a seizure, asthma attack, putting joints back in and its not something I have been able to get comfortable with. As a result, I still rely heavily on my husband for the very private stuff; the stuff where I need to be calm as stress aggravates it; the stuff that requires any removal of clothing items, the stuff that make me cry and scream in agony, the stuff that leave me confused and unable to communicate very well. If he’s available, I’ll take it. I trust him with my meds, my joints, my health, my safety. It takes time for me to trust other people. My current carer has been here six months and I’ve only recently started leaving the house with her and not Chris, edgy but knowing she could deal with the stuff that goes wrong if they go wrong and that Chris is at the other end of the phone to provide instructions.
EDS for me is not about the day to day stuff; I can manage quite well in my own home that’s adapted and set up to suit my needs. I can’t manage when either things go wrong – astma attacks that stop breathing, seizures, blood pressure drops that cause fainting and falls which in turn result in nasty dislocations, eye lenses dislocate, hearing goes completely or I need to visit unfamliar, unadapted places. The visibility of my conditions doesn’t just depend on how visible symptoms are, it also depends on how visible support is. I don’t always use the wheelchair, I don’t always need physical assistance to get up, I don’t always need help relocating joints. I still need help, I can’t walk by myself, I shouldn’t get up unless someone’s hovering nearby as I often face plant forward and falls are particularly bad with EDS and even when I’m doing my joints, I sometimes get halfway and then screw something up and need help, or in the process of putting one joint in dislocate another and then can’t get either back or I just can’t do it and so need to be able to say help, can’t fix this one.
I can have a very visible condition – braces, splints, wheelchairs, crutches, sticks, funny walk, seizures, going blue when I can’t breathe, being unconcious is pretty spectacular in public – but I don’t want the looks, the stares, the attention. I want to go my way just like everybody else. As such, I camouflage. I find somewhere private before the spectacular happens and even better, I keep my life within set limits to avoid incidents. As support goes, I prefer the minimum and invisible; I prefer equipment over a pair of hands and I prefer keeping it discreet.
Living with EDS is a little bit like trying to loose weight and sticking to a set calorie limit for every day. You can eat a small piece of chocolate and skip lunch once a in a while, but not every day. It’s a continuous balancing act. If you add one thing here, you need to take it away there. My life has been chopped into pieces by the system and its almost easier to comply than it is to object; but not quite. Having the right to say I’ll accept help from a care team for the simple stuff, the every day stuff, the cooking, cleaning, driving, moving things (and little people), carrying things, handing me things, getting my shoes and coat on and off, but not for the intimate stuff unless I have to, unless Chris really isn’t available, is a choice I should be allowed to make.
Choosing to keep my health issues private is a decision that I want supported. I choose to wear loose clothing, I choose to find a private spot to relocate joints when possible, I choose to get home and into my bedroom as much as possible if I’m at risk of a seizure or severe asthma attack. For practical reasons, yes, I eliminate triggers easily in one room, not so much in public, but also for emotional ones. I detest an audience. Discretion is a two-edged sword though. The less visible my disability, the more judgemental attitudes tend to be. I used to be a lot less sympathetic on this issue with the attitude that if you want people to accept your handicaps, you can’t hide or disguise them and expect people to still notice. Dealing with people a lot more has made me realise that people may find it difficult to grasp the concept of invisible disabilities, but its not impossible. It’s not up to me to make them sit up and notice; its not up to me to justify the help I need and/or receive. It’s up to me to create a life that I’m comfortable in and to ask for the help I need, not just put up with the help I’m entitled to. Invisible disabilities are tricky to live with, but its not impossible to bring the point across that they’re there, it’s just difficult and easily forgotten about. As for support, having a family makes the help I receive more invisible too. You don’t notice grandma pushing the push chair so Daddy can keep Mommy’s hips in place as much as you notice Daddy pushing the push chair and Mommy with her carer. You don’t notice the dozen times a night Chris puts my joints back in, but you’d notice it if I had to summon a carer from the lounge to do it.
It’s every day when I brush my teeth with Chris. He puts toothpaste on my brush and his, open the tap, I stick mine under, so does he, I brush my teeth, he brushes his, I spit, he spits, he rinses both toothbrushes, pops my wrist back in, open and closes taps and we’re done. With a carer, they do exactly the same thing, but in the inbetween bits, they stand and watch and for every part, I give instructions; can you open the tap, can you put toothpaste on my toothbrush, can you rinse my toothbrush, close the tap, put my wrist back. Here, -move fingers- put your hand there, now push here like this, then turn, like this, ow, no, not that way, ow, no not like that, pressure here, move your hand a bit lower, now, push, ow, no to the left, now push harder, now push and turn, yes, like that, okay, good try, let try it again all together, push and turn and ow, yes, like that just a bit more pressure, so again, back to the beginning, now push harder and turn and… we either get to finally, yes that’s it, or that hurts too much, don’t worry about it, I’ll sort it out in a minute… Chris!
I’m lucky; I get to keep my disability quite invisible for the most part. I can do all the things, well, get by with tricks and discretion (order fish not meat, mash or chips not roast potatoes, small drinks, bottled water, squishy deserts), at a price, of course. I recover from a lunch out the way other people recover from a marathon run done with a chest infection and sprained ankle. In private, afterwards, I put myself back together again. It makes a lot of things harder, but, it leaves me with at least a sense of normality. My health is not my life, it tries to be, but it isn’t and it shouldn’t be. The easiest way to let it take over is by letting it be everywhere, allowing it to be a topic of conversation rather than a short, polite, rote introduction. When I’m asked how are you? I say, fine, thank you. It doesn’t mean I’m fine, it means that I have so many health appointments and such an extensive care team where the topic of conversation is always my health; when I do something else, anything else, I’d like it to be about something else, anything else, but how I am doing today.
