I was diagnosed with classical Ehlers-Danlos syndrome (cEDS) when I was 14 years old. As a child, my mother took me to the ER for dislocated shoulders so often that the doctors thought I was being abused. It wasn’t until my knees started dislocating as a teen that I was given an official diagnosis.
I was the third child in my family to be diagnosed. One of my older siblings had already undergone two knee surgeries for chronic knee dislocations, and another jaw surgery for TMJ dislocations. My mother had to wear permanent braces and use a cane to walk. My diagnosis was neither a surprise nor anything I thought much about.
In college, I suffered from severe stomach issues. I struggled to maintain weight and was diagnosed with an eating disorder and IBS associated with stress. The fact that I loved to eat made the eating disorder diagnosis confounding to me. Yet, there it was. Through the years, I have met with different doctors for anxiety-provoking pain and symptoms. I started to think of myself as a hypochondriac (and have been accused of being one) in my younger years. I cannot count how many doctors have asked if I am seeing anyone for my anxiety. The majority of my providers have been deaf to my response, “I swear that the anxiety comes from the pain, not the other way around”.
It wasn’t until I found The Ehlers-Danlos Society website (in my forties!) that I came to fully understand my diagnosis. My stomach issues, debilitating migraines, hair loss, unexplained sudden and chronic pain, and feelings of being out of control all started to make sense to me: cEDS is a bit more complex than dislocating knees, hips, and shoulders.
As I have worked to better understand my diagnosis, I have developed an entirely new relationship with my body. It may sound strange, but I have developed the habit of thanking my collagen-deprived joints for working with me when I take a bus full of students on a hike. I congratulate my stomach on its ability to hold food when I eat, and I count the days without a migraine or visual interruptions as gifts from the migraine gods.
What I have yet to come to terms with is doing all of this without judgment. I still find myself embarrassed and uncertain when I meet with a new provider. I don’t push back enough when a provider tells me that perhaps we just need to “give this symptom” a little time. I feel uncomfortable telling friends or family when I am in pain or that I fear doing certain activities because I don’t want to deal with the time it takes to recuperate from a severe dislocation. I do my best to hide my disease and the accompanying symptoms. When I do talk about it, my tone and explanations defy my frustration and self-judgment. If invited on an impromptu hike or bike ride, I make up an excuse if I have pain or feel anxious about my joints. I get angry if someone shares even a little bit about my medical situation with others. I fear being seen as weak, less than, or incapable of “handling” things. It’s the strangest thing.
When I read about others whose suffering and struggle is a tsunami next to my occasional tidal waves, I find myself even more critical and judgmental of my limitations. I have developed a strong intellectual acceptance of my diagnosis. However, I am still working on self-acceptance. I don’t know exactly what that looks like or feels like. I imagine it includes a willingness to openly share my diagnosis with others. I hope that it means feeling less shame about my seeing every downhill slope as a potential road crash, or laughing off a sudden dislocation as “nothing” rather than telling those around me I need to take a moment of self-care. I am nowhere close to these goals, but I decided today I would take baby steps towards this type of openness and self-acceptance.
With that: Hello. My name is Rebecca Richardson. I have cEDS. Sometimes I can’t sleep because my hips hurt to lie on. My knees dislocate walking a few feet to go to the bathroom. Today I am struggling to type because my pinky finger dislocated last night, and it is still subluxed. It just won’t jump back into place. Sometimes I have to ask my husband to turn on the shower because the downward movement dislocates my shoulder. Sex can be tricky, hips dislocate, knees dislocate, back gets a bit out of joint, and I REFUSE to tell my partner when that happens.
I love hiking, biking, tennis, running, and being outdoors. The last time I did any of these, I hurt myself. I won’t let that keep me away from them. I just don’t want to do any of those things when someone is watching. I hate it when you can see my pain and embarrassment from a dislocation. Just after an injury, I will do my best to walk without a limp or talk without sucking in my breath to control the pain. And, I have it easy. My mother cannot walk, my sister has chronic debilitating pain, and I have beautiful stretches that are symptom-free. During those stretches, I like to pretend I don’t have a hidden disease. When it comes back to remind me, I refuse to be kind to my body. I push myself until the pain is almost unbearable because there is a small part of me that believes somehow this is ‘my fault’ or I did something to deserve this knee dislocation or hip pain.
Thank you for letting me share my story. I have gratitude for all who have shared their stories with me. You are helping me and others to norm our individual experiences with EDS. Your courage inspires me.
