The Metaphors I Use to Explain Invisible Disability
I’ve recently started using mobility aids due to hypermobile Ehlers-Danlos syndrome causing multiple hip subluxations, rendering walking more than 100 feet or so without my forearm crutches both extremely uncomfortable and frankly, not very safe. I use my crutches in a weight bearing manner, meaning I use them to support the joints in my lower body while walking apparently normally. I can’t believe the number of well meaning people that exclaim “oh my, you don’t look disabled!” and variations thereof.
I’ve finally discovered a way to explain the impact that hEDS has on my life and mobility, in terms a layperson can understand. Imagine if you will:
You’ve gone and done it. You’ve bought yourself a house. It’s a pretty house. It has new siding, new windows, a lovely landscaped yard, it’s in a good neighborhood that is close to amenities and in a good school district. The mortgage payments stretch your budget, but you’ve been assured it’s a good investment — besides, building equity is always a good thing, right?
You get those shiny new keys and move right in. One year after you’ve moved in, you find out that underneath the top soil in your lovely landscaped yard is a huge deposit of sand. The sand has shifted, causing the foundation of your house to crack, and because your foundation has cracked and shifted, your roof now leaks.
These were issues that weren’t apparent when you bought your house, but be that as it may, underneath the gloss and polish you’ve major issues that aren’t readily seen and are frustrating and prohibitively expensive to fix. At the end of the day, your house looks great, but has major structural problems.
In another scenario, you’ve just bought a car privately, and paid cash. It’s a nice car — a bit high mileage at 101,000 miles, but it’s freshly painted, the interior is in great shape, it just had new tires put on, and best of all, you got it for an awesome price!
The problem is, when you take it into the mechanic a month and a half later because it just broke down for the third time and repairs are now beyond your mechanical skill, you find out that the odometer has been rolled back from 700,000 miles and the frame is rusty. In short, it’s a very pretty paperweight — the glossy bits distracted from the major mechanical issues lurking underneath the hood.
Very much like the above scenarios, our zebra bodies don’t always display outward signs when our joints sublux or in some cases fully dislocate. This can cause confusion for the layperson, who often thinks cause and effect are linear things that affect everyone the same way. For a person with normal collagen, it usually takes a heck of a lot of exterior force, such as a fall or car accident to sublux or dislocate a knee or a hip — unusual external force equals debilitating injury. For me, it takes a wrong step to dislocate a knee, or a wrong movement to sublux a hip. It takes a sneeze to “pop a rib,” turning over in bed wrong to shift my pelvis, or opening the pickle jar to dislocate a finger; largely without any exterior signs. Little to no exterior force equals debilitating injury.
I’m unsure of what “disabled” is supposed to look like, seeing as disability comes in so very many forms, both visible and invisible. I guess at the end of the day I can’t complain that people don’t think that I walk around looking like a train wreck, however the “you don’t look disabled” is an attitude that can harm many of us — from the man with fibromyalgia to the woman with lupus to the child with congenital heart disease. All of those people may be disabled without any exterior signs.
After so long struggling to explain invisible disability to laypeople without going into complex medical terminology, and without the benefit of visual aids, I’m relieved that I’ve finally found a way to explain it in a way that people can relate to, and maybe start to realize that there are innumerable forms of disability — and whether they are visible or not, they’re equally valid.
Getty image by France68.