When I was around two or three years old, I started showing symptoms of Obsessive Compulsive Disorder. My parents were obviously very concerned. I had full blown panic attacks, rituals that made leaving the house if they weren’t completed difficult if they wanted to avoid a meltdown, the whole shebang. They ended up taking me to my pediatrician who referred us to psych at Riley Children’s Hospital in Indianapolis, Indiana where I continued to go through outpatient Cognitive Behavior Therapy until the first grade. As a small child, I didn’t know anything was “wrong” with me. All I knew was that once or twice a month my parents took me to see the nice lady who had two big bookcases full of stuffed animals and toys where we just talked and played.
My parents were rock stars. This was the early 90’s. Mental illness was super stigmatized (still is) and people especially didn’t admit their toddler had a mental illness. That would’ve been a parental nightmare for unnecessary judgment. I’m very thankful they didn’t buy into all of that. It was hard. I struggled with suicidal ideation as a kindergartener. I wanted my brain to stop torturing me. I distinctly remember one panic attack where I ran into our yard, not sure where to go, but realizing I couldn’t run away from my brain or my thoughts so I just sat down in the middle of the yard and cried and screamed. My brain would always go with me.
I had a first grade teacher who made a big difference in my ability to cope in school so I was receiving support in school and at home. Around this time is when I stopped going to the children’s hospital for treatment and my little childhood brain forgot all about being different and had many less panic attacks. I still had and have symptoms but they are now mild and well managed for the most part. Around this time is when I also started displaying small symptoms of Ehlers Danlos Syndrome.
I started in dance class and could do the splits the very first time I ever tried. Weird, but kids are stretchy, right? I also discovered on accident that my hips could pop in and out. Weird, but kids are stretchy, right? Then in gym class from elementary through middle school, they started doing the presidential fitness tests. I was unremarkably average in all but one of them. The V sit reach. This is the one where you put your feet twelve inches apart and they measure how far past your feet you can reach. One year my gym teacher was so determined to measure the farthest I could reach, she stood against the wall and put the board against her feet and I could still reach the wall. Weird, but kids are stretchy, right? In middle school, for whatever reason, my lunch tablemates were seeing how stretchy everyone’s cheeks were. When it was my turn and mine were noticeably softer then everyone’s jaw dropped and they made fun of me when I gave my cheeks a tug. I discovered a new party trick. I can stretch my cheeks out to the point it looked like I was going to fly away. I believe the terms used to describe them were flying squirrel wings or hamster cheeks.
High school is when my mental health symptoms started to come back and more problematic EDS symptoms decided to make an appearance. My parents took me to my PCP and I started taking medication for anxiety to help curb the OCD symptoms and the associated anxiety. My immune system was awful and my GI symptoms started to get really bad. I was told those are often psychosomatic symptoms of anxiety or depression. All this time, the joint instability and flexibility kept going strong. I’m not sure, but I don’t think those are psychosomatic.
I went to the doctor and missed a lot of school all throughout winter. This is when my Narcolepsy/Chronic Fatigue symptoms started to come up. But when my mom took me to the doctor, my PCP said “You’re just not sleeping enough, your depression is making you tired”. I was never truly depressed though. I was sleeping as much as I could, I couldn’t stay awake in class, and there was nothing more I could do. I also obtained a couple of injuries around the same time. Soft tissue injuries that never fully healed. I was deemed a “slow healer” or told that my brain was tricking me into thinking I wasn’t healed due to my anxiety. I struggled through it, sleeping through important alarm clocks, and skipping a few homework assignments because I just couldn’t cope. My senior year, I cut back on my competitive sports so I could focus on school and let my body heal which did help somewhat.
After high school, nothing got better. The fatigue persisted, the chronic pain got worse, and more dislocations started happening. The joint flexibility I was told “some kids just have” didn’t go away when I stopped being a kid. But still, no one saw it as a red flag. I also began to self-harm and developed an eating disorder. I continued to see my PCP about my EDS symptoms that we did not realize were EDS symptoms and they were continually excused by my mental health struggles. It became apparent to me that having a mental health diagnosis on my chart worked against me. “Psychosomatic” was a word I heard a lot. Invisible pain without apparent injury in a healthy young woman is not perceived well. I was never validated. I was never heard.
I had been to the doctor for fatigue many, many times already. Apparently my blood test showed that I had mono at some point. So according to my doctor “that can linger and is why you’re tired, you’re worrying too much again” even though the fatigue symptoms started before I ever potentially had mono. It wasn’t until I started falling asleep driving that I decided it was time to force my way into a specialist. I went back to my PCP and told him that I wanted to see a sleep doctor and he referred me out. I had been preparing to hear “no” but it seemed my assertiveness and clearness of knowing what I wanted got me somewhere. I could tell that he didn’t think they would find anything, but they did. The validation gave me the confidence boost I needed to pursue my other ailments. I had started to feel apprehensive every time I went to the doctor for fear of being told it was psychosomatic again.
At this point, I had begun working in health care already. I went through insurance training and realized that my insurance didn’t require a referral. I started bypassing my PCP if there was a specialist doctor I wanted to see. I knew something was not normal within my body. I just had to take it upon myself to find out. It took years. It wasn’t until 2015 that I had even heard the words “Ehlers Danlos Syndrome”. I was watching a Youtube video and a woman and her daughter both had it. She had a feeding tube and a wheel chair, so initially I thought “this sounds familiar but I don’t need any of that stuff, could this still be something to look into?” Then I searched for Ehlers Danlos Syndrome on Youtube to see if anyone else was talking about it. That’s when I realized there must be varying degrees and I found a few people who seemed to be more like me. I started to research.
I had stopped going to my PCP for anything other than acute illness and checkups. I appreciate his attentiveness to my mental health. I just got the impression that I wasn’t taken as seriously when I brought up a physical concern because it was followed up with a mental health question or excused away by my youth. As it turns out, it took three years for me to get diagnosed with EDS. The next time I saw my PCP, I told him we got to the bottom of my issues finally and he replied that he had read that in my chart. I asked if he knew much about Ehlers Danlos and his reply was that it was only ever briefly mentioned in med school. We would’ve never come to my conclusion if I hadn’t decided to advocate for myself and get second opinions when I hit a roadblock.
I think this also stands to prove that doctors in general need more education on things like EDS and more information on knowing when to spot the symptoms and tie things together. Before I went to genetics for diagnosis, we danced dangerously close to a fibromyalgia diagnosis but psychosomatic was that reverberating word around my care. It was still thought that it was caused by my issues with OCD and anxiety regardless of if I was currently having problems at the time. While there is a possibility for those to affect your physical health, having mental illness shouldn’t be the deciding factor on if you have something physically going on with you. It shouldn’t cause the dismissal of patients in medicine that it does, regardless of how well-meaning the doctor is. My doctor is a wonderful doctor but he fell prey to the same stigmas society has around mental illness. The positive in all of this is that I gained the confidence to advocate for myself and my health.