4 Life Lessons I've Learned From Having Ehlers-Danlos Syndrome

From all outward appearances, most people would never know I had a rare genetic disorder. I work a full-time job as a director for a public library. Standing in front of you, I give no outward appearance of having anything “wrong” with me on most days. I lead a full life with a loving partner, a kind group of amazing friends and colleagues, and involvement in nerdy activities outside of work.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I am a month away from my 40th birthday and have lived my entire life with Ehlers-Danlos syndrome, though I was only diagnosed 12 years ago after a couple years of ER- and specialist-hopping with a dozen different incorrect diagnoses, tens of thousands of dollars, and no answers. Genetic testing for the win!

Ehlers-Danlos syndrome is a genetic disorder that affects the body’s production of collagen. Our bodies are 30 percent collagen, so this syndrome affects ligaments, skin, tendons, internal organs, and the nervous system. I have the hyper mobility subtype of EDS, and so my hypermobile and often-dislocating joints create constant full-body pain, bone cysts and other skeletal problems, as well as constant muscle tightness (think of tissue paper trying to keep a jiggling anatomical model skeleton together).

In most ways, I detest my EDS. Right now I’m wearing an eye patch over one eye because I have a posterior vitreous detachment in that eye that created vision loss (hopefully temporary but no one knows). I joke at work that “It’s Pirate Day every day!” but on the inside I’m cringing when people comment on this rare visible sign of my lifelong battle with this syndrome. Every day it is something new, and on no day is that “something” pleasant.

EDS has taught me a lot, though. I have to give it that much. When life puts you through the ringer you learn things. Or, as a friend said to me recently, when life throws a Niagara Falls’ worth of lemons at you you learn to make lemonade pretty damn fast. I have learned four important lessons from my experiences with EDS and hopefully they can help you too.

#1: Guard Yourself

When your body is functionally made out of cooked spaghetti and old, sorry twist ties, you quickly learn to protect yourself. I’ve learned not to let people high five me (it usually hurts) or hug me (unless they know to be gentle). I look at the ground when I walk so I won’t trip. I walked with a cane for years to prevent falls. I move through the world carefully as if I was made of the most thinly blown glass — because if I do I lessen the chances for pain and irreparable damage. The overall lesson here is that only I know my limits. I know I can go for a 2-mile hike on mostly even terrain and be OK. I cannot go for a 7-mile hike up steep ravines (ankles will dislocate), down steep hillside stairs (a knee will dislocate), or on rocky ground (probably will break a toe or three). Listening to my body and guarding it like a fierce mama bear is the best strategy I have for successfully moving through the world. I think more people would benefit from listening to their bodies more closely.

#2: Wear Masks

If I gave physical or verbal signs of how much pain I was in all the time, I would in short order exhaust both myself and all of those around me. Instead, I wear masks all the time. I have a collection of masks that a Halloween store would envy. My stoic mask is my favorite and most often used. But I also occasionally bring out the playful mask or the flirty mask. Others come out less frequently. I can assure you these masks are necessary. I know this because I have seen the masks drop, en masse, from a group of a dozen people with EDS — all at once — and it’s not pleasant or sustainable. It’s cathartic and helpful to do once in a while in a safe group of people you can trust to understand what you’re going through, but it was not helpful for me to do in public, at work, or even sometimes with my loved ones. Don’t worry—the mask falls eventually. I’ve found the ability to summon these masks from the ether to be extremely helpful when I have to put on other kinds of masks — the public servant mask calmly listening to someone scream incoherently, the neutral boss mask, the tolerant stranger mask. Those masks have a purpose, and I am glad to have learned this skill.

#3: Distrust Authority

You start to distrust doctors when it takes you years to get a definitive explanation of the myriad cocktail of things that are wrong with you. Doctors are positioned in our society as one of the few professionals you are expected to believe and follow unquestioningly. Imagine you spend at least an hour a week in a doctor’s office. Imagine you hear doctors say the severe pain you experience is just in your head, and a specialist tells you that you have a rare disorder only contracted in the Congo so you must have been in the Congo, right? And the anesthetic they gave you must be working so you can’t really be feeling any pain and must be imagining it and so they’re going to go through with the invasive procedure anyway and you just have to deal with it. I’ll tell you what I did after hundreds of these situations — I started questioning doctors, questioning test results, pretty much questioning anything and everything medical. I grew up in abject fear of authority figures. Now I know better. We’re all just people, and we can all be wrong sometimes. This lesson helps with humility — accepting that I make mistakes — and also with seeking to understand others when they turn out to be wrong. It happens to the best of us, and that’s OK.

#4: Trust Your Team

When you have a chronic illness there are a few people who get to know you really well and whom you can count on to give you good advice and offer you support. I have a fantastic primary care physician who keeps me on point and knows me well enough to know what I need and when I need it. I have a team of other medical practitioners I gradually found through a serious amount of failure with others. Rounding out this dream team are my significant other and friends. They all help more than they know. If your boyfriend says I’m walking weird, I probably am and should figure out why. If I can’t get numb at the dentist and she suggests an alternative approach, I’m going to trust her. Trust comes hard for many of us, but I cannot overemphasize its importance. If we don’t trust those closest to us, we close ourselves off from the world — and I still have a lot left to give.

Thinkstock photo by Astarot