What It’s Like to Live With Ehlers Danlos Syndrome Type 3
Living with a genetic disorder for which there is no cure can be a head trip.
I was diagnosed in early 2019 by a specialist who had experience with this rare disorder. Many patients are not so lucky and go undiagnosed or are diagnosed incorrectly. One reason this disorder is so hard to live with is that it is so poorly understood. If you, or someone you love has Hypermobile Ehlers Danlos, this article is for you.
I heard Hypermobile Ehlers Danlos described once as “living in the day after a car wreck for the rest of your life.” I can’t think of a better way to describe what living with Ehlers Danlos Syndrome feels like. It’s not a screaming, stabbing pain, but a dull ache in every. single. joint. An ache you can shove to the back of your mind just long enough to overdo it before it comes roaring back with a vengeance.
Years ago, when I pressed my rheumatologist about why my symptoms didn’t fit his diagnoses and asked if something else might be wrong with me, he replied “In medical school they tell you that when you hear hoofbeats behind you, think ‘horse,’ not ‘zebra.’” In other words, the obvious conclusion is probably the correct one. The Ehlers Danlos Society’s logo is a zebra for this exact reason. Turns out, my disease was the zebra.
Living with Hypermobile Ehlers Danlos (or EDS-3) means that at 26 years old, tasks that would be easy for someone twice my age are difficult for me. I had quit two careers for health reasons before I was correctly diagnosed because both required standing and repetitive motions with my hands. I just couldn’t keep up and after work my husband would come out to the car and carry me inside, up the stairs, and help me put my pajamas on so I could could sleep for twelve hours and then get up and do it all again the next day. It was no way to live.
One of the most painful effects of EDS-3 is that ligaments in your body over stretch and never stretch back. This causes frequent dislocations and even more frequent partial dislocations known as “subluxations.” (I once dislocated my big toe by sitting “criss cross applesauce.”) I regularly wear KT tape to keep my patella from sliding out of place.
Miraculously recover or die. That's the extent of our cultural bandwidth for chronic illness.— S. Kelley Harrell
Many of my joints also stretch far beyond what they should. For example, my knees bend almost ten degrees backwards. This can make exercise nearly impossible and excruciatingly painful when attempted. Because the ligaments do not heal after being overstretched the way most people’s do the damage is permanent. There’s no going back.
Besides the obvious issues with joints sliding out of place, Hypermobile Ehlers Danlos means that I don’t heal as quickly as a normal person. Paper cuts last for weeks, bruises last for months. My skin scars easily and permanently with very little provocation. EDS-3 can also cause other complications such as irreversible eye damage and dental problems. In fact, this summer I am getting gum grafts because my gums are literally peeling away from my teeth even though I have excellent oral hygiene. I have been blessed not to have any ophthalmological complications yet.
Do you, a loved one, or a friend have Ehlers Danlos Syndrome?
Spinal instability is common among patients with EDS-3. This can cause extreme spinal pain, neck pain and debilitating headaches due to pinched nerves and poor circulation. For years as I was growing I struggled with terrible headaches that were not migraines and went for weeks at a time barely sleeping. It felt crushingly hopeless.
Just like most chronic illnesses, Ehlers Danlos causes extreme fatigue. Sometimes I can trace this fatigue back to a specific activity, sometimes living my day-to-day life with no extra exertion can still cause me to be completely exhausted at the end of the day. Often times this fatigue is due to my body trying to “mute” the pain. (Just like if you broke your arm. After a week it may not hurt anymore, but that doesn’t mean it’s no longer broken. Your brain is just muting the signals from your nerves because you are already aware of the damage.)
Because EDS is rare many physicians don’t know about it. This means you are frequently misunderstood, not just by well meaning family and friends but quite possibly by your doctor as well. When I was finally diagnosed by a specialist and then sent back to my primary physician with a letter explaining my disorder, my doctor actually had to google it while I sat there. Because it is so poorly understood, I believe it goes undiagnosed in many cases.
No other disease in modern medicine has been neglected in such a way as Ehlers Danlos Syndrome.— Professor Rodney Grahame
While Hypermobile Ehlers Danlos has no cure, there are a few things you can do to make life bearable; but it starts with a diagnoses. Knowing what is wrong with you is the first step to peace of mind when it comes to life-altering illness. The understanding of family and friends also makes life with chronic illness more tolerable. The fact that you read an article like this shows your compassion for your friend or loved one with Hypermobile Ehlers Danlos and compassion makes all the difference.
- The Ehlers Danlos Society
The Ehlers-Danlos Society is a global community of patients, caregivers, health care professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes and related disorders.
- Ehlers-Danlos Syndrome | The Mighty
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This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.