I’m just a girl – Diagnosing part 4 (Ehlers-Danlos Syndrome)

I’ve always been bendy. It’s a talent that helped me stand out in dance classes and yoga. As a kid, it also made for a great party trick and an easy way to impress my friends. Can anyone fit in that box? Me! Who can reach the toy behind the sofa? Me! Can anyone match the teacher’s plié and splits? Me! 

Stretching also felt great and I found myself eager to spend time moving and testing the boundaries of my body’s flexibility. Sports that relied on balance and fluidity were ideal formats for both showing off and feeling powerful. I have always had good body control, so falls and injuries were infrequent. Overall, my bendiness was a benefit and didn’t seem to create any obstacles to my physically active life. 

As a young teenager, I was the captain of a canoeing team. It was one of my favorite pastimes. All of our practices and competitions took place in the ocean. Every excursion was a major workout and used full-body motions. One day, in the middle of practice, on the downswing of a rowing motion, my right shoulder popped out of the joint. I felt a searing burn throughout my entire arm and collapsed on the bottom of the boat. We were about an hour from shore. Pretty quickly, we figured out why my arm was not moving and that the pain was radiating from my shoulder. I pushed my shoulder into the side of the boat and managed to get the joint back in the socket. Using a piece of cloth, we made a sling and finally got to shore. It was my first dislocation. 

There was no hospital visit. A family friend who had a medical background told us to keep the arm in a sling and that it was fine to use as soon as it felt a bit better. That was it. There was no information or indication that an easy dislocation at a young age was a sign of future problems. That one injury has plagued me throughout my life. It prevented me from playing sports. The joint would occasionally dislocate on it’s own. Frequent sharp and achy pains ran from my scapula up through the joint and into my neck. 

Occasionally, subluxations in my knees and hips would happen. I didn’t know exactly what was going on, but I knew it felt similar to my shoulder and that I had to stop whatever I was doing. I would try to relax and lay down to let everything settle. Eventually, I went to a small town orthopedist for my shoulder pain. He injected my shoulder joint full of iodine (which is one way I found out that I was allergic to that lovely mineral). After a few images, the doctor told me that I had “big joints” and that I should do exercises to strengthen my shoulder muscles. So I did. I focused my workouts and constantly used my “loose” shoulder to try and tighten it. 

Unsurprisingly, that led to more pain and frustration. I felt like a whiner when I couldn’t go out surfing or run hills. People around me thought I was exaggerating and finding excuses for not participating, all because the agony was invisible. They couldn’t see how or why I was suffering. After all, I was healthy, fit, and flexible.

It took 20 years to get an official Ehlers Danlos Syndrome diagnosis. Over the years, a few doctors would call me hypermobile. I was sent to a geneticist once who said that, while I met many of the standards, my hamstrings weren’t flexible enough to be diagnosed. That was just one of many mind-blowing misdiagnosis moments. Finally, a neurologist noticed my skin elasticity, softness, and scarring. He asked me to do some mobility tests. He looked at my skin biopsy results from other tests and quickly told me that I had either Classical or Classical-like EDS.

There are currently 13 types of EDS. Classical/Classical-like EDS are also known as the hypermobility types. It is the most common and least medically dangerous type of Ehlers Danlos Syndrome. As most of you know, rare and under-diagnosed conditions require sleuthing and constant awareness from the sufferers. We have to pressure, prod, and protest our way through the medical journey. I likely would have spent my entire life thinking that my EDS symptoms were just a self-inflicted exaggeration of a normal body. I would have thought that my scars were just bad skin or that my dislocations and joint weakness were due to my ineptitude. 

Now that I know what my condition is, I have discovered how much EDS impacts my health and daily life. My dentist has it on record and uses that to help with my dental hygiene. Any physical therapy or alternative treatments are careful to not exasperate my EDS. Dermatologists keep the collagen aspect of the condition in mind. Using high-quality daily items such as mattresses, shoes, purses, and utensils all factor into living with EDS. Learning about braces, wraps, and skin care all matter greatly. 

If you are hypermobile and experiencing any pain or dislocations, take some time to research Ehlers Danlos Syndrome. Thankfully, there are now many more resources and medical awareness of the condition is growing. I know it’s fun to be bendy. I still enjoy stretching and pushing my body, but now I don’t go too far. I work on strengthening my tendons and muscles that support the joints. As we age, EDS seems to show its negatives a bit more. The pain and moments of “I can’t do that” become more aggressive. Joints get slipperier and the fragility of movements can dominate your thinking. Support (emotional and physical) is key. Let your community know that you are experiencing real symptoms. Ask for help when you need it. Demand that your doctors take you seriously. Leave room for self-forgiveness and frustrating moments. I hate to say that the medical legwork all falls on your sore shoulders, but it does. I’ll be here to commiserate in your pain and celebrate your successes. 

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