How Visible Is My Ehlers-Danlos Syndrome?

Sometimes I wonder how much of my Ehlers-Danlos syndrome (EDS) is visible to others.

Apart from the obvious things, like my bruising, I think much goes unnoticed. This is partly because I have more moderate EDS, so I don’t have as many visible features as those with more severe cases.

There are 13 different types of EDS, each ranging from mild to severe. Thus, my type and severity are one reason my EDS experience differs from others who technically have the same disorder.

I generally prefer to fly under the radar and don’t like being the center of attention. It’s taken me a long time not to be overwhelmed when all eyes are on me. So, in this way, I really enjoy that people don’t notice. It means I can carry on as “normal.” But I also recognize that not everyone enjoys this privilege.

For most everyday tasks, I’m not as affected as those with more severe forms of EDS, so it’s easier for me to blend in. As a teacher and college counselor, my symptoms rarely directly conflict with my duties. Of course, dealing with chronic pain, pain flares, anxiety, and chronic exhaustion affects me, but I’ve learned strategies so that I can usually compensate.

There are times when I’m injured, however, when I realize just how good those of us with EDS are at compensating — to the point that it’s a natural reaction.

The last time I dislocated my shoulder (for what felt like the millionth time), the only person who noticed was my closest colleague, who realized I was eating lunch with my left hand instead of my usual right. No one else recognized that I was doing anything differently.

I suppose in many ways that’s a good thing. It means I’m so effective at adjusting that my daily routine isn’t very affected by my injuries.

But on the flip side, does this do a disservice to the many people who have invisible medical conditions? Or, does it simply demonstrate the fact that many people don’t notice things that don’t directly concern them? This is one reason the stigma of unseen conditions can be so difficult to combat.

When I tell someone I have EDS, they often reply with something like, “You look totally normal.” Why yes, I do, especially if I haven’t done anything clumsy lately and I’m not sporting any impressive or obvious bruises.

I always try to promote a better understanding of invisible illness when this happens, and it’s amazing how many people seem to have no idea that such illnesses exist. I suppose all we can do is continue to promote awareness with every opportunity, and make sure people understand that just because someone looks fine doesn’t mean they’re not managing a chronic condition.

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