Published: 26/01/2023 Tags: Stories

I feel good to be called a zebra

I’m a violinist and a doctoral student. I am also a part-time violin teacher. I hope to write my dissertation on the topic of hypermobility in violin playing and use pedagogical exercises to address hypermobility-related performance challenges. So, I can use my research to help raise awareness among the music education community.

I grew up in China and came to the United States for my master’s in music performance when I was 22. Before I was diagnosed with hEDS, I spent my entire twenties seeking dozens of self-help books and blaming every symptom on mental health. Because I also suffered from an eating disorder, anxiety, and depression intermittently for a couple of years, any of my physical symptoms at the doctor’s office were considered as a manifestation of my anxiety or depression. I really believed them.

Although strange things kept happening to me, I started having more subluxations and instability that isn’t related to my violin playing, gastric intestinal issues when I was really trying to eat healthy, and orthostatic intolerance that started in my teenage years. No one in my life had thought about connecting all the issues together until my big flare-up after turning 30 last year.

I tried the float tank for the first time. It felt amazingly relaxing, but it caused my neck to suddenly feel unstable. “I thought my head was going to fall off my neck!” I told my physician. I went to see the doctor because other symptoms also started bothering me a lot more: dizziness, fatigue, fainting, brain fog, etc. Because of those other symptoms, the physician only asked me if I was eating okay (enough) or if I have any depressive episodes. I was feeling judged because I tried my best to take care of myself. But nothing was working. I ended up frequently in and out of ER due to fainting spells from POTS and PNES last fall.

Some of the ER physicians were questioning whether I was faking. I developed medical PTSD from those hospital experiences. Luckily, I come across a YouTube video talking about POTS and EDS one day. For the next few weeks, I researched everything about Ehlers-Danlos and hypermobility. However, when I finally sat down in front of my osteopathic doctor, I was so worried that I am wrong again and nervous that she will think I had self-diagnosed myself. So, I only spoke very softly, “I think I might be hypermobile?”. Surprisingly, she got excited and tested me for the Beighton score in the office. I got 9 out of 9. After getting the referral to the geneticist from her, everything seems to be clearer.

We were able to identify some of the early signs of my EDS at a very young age. I had optic nerve dysplasia at 4 years old. Although I am always super clumsy, my ankles never had a severe sprain due to the instability, but it also caused frequent subluxations. Reassurance from my geneticist’s letter “my impression suggests that she has a medical disorder that can cause anxiety from POTS and depression from pain and activity limitation rather than a psychiatric disorder…” really helped me to stay strong mentally.

After more workups and testing, I was officially diagnosed with hEDS in February this year. Many so-called “weird” things start to make sense now: the painful handwriting, wrists dislocation during my summer music festival in 2016 turned into chronic subluxations, strange numbness around my upper arm due to the thoracic outlet syndrome, extreme sensitivity to ear plug/earring/headpieces due to the sensitive and fragile skin, my friend’s comment about me twisting my legs when I’m sitting due to hypermobility, etc.

For years, I wanted no labels because I didn’t feel like I got the right answer. But now, I feel good to be called a zebra. Getting the diagnosis is only the beginning of the journey, although it did take me almost 8 years of misdiagnosis to get here. I’m still in the midst of figuring out several other possible issues related to EDS. This is a journey of learning about my body and learning to live with it. I will always have those good days with less pain, and they need to be celebrated and cherished. I now learned to not overexert myself during those days. Because when those bad days come, I just have to be kind to myself and take my rest or my mobility aid.

I’m beyond grateful that EDS hasn’t affected my violin playing so much. I hope to learn more about injury prevention for hypermobility to keep myself on performance stage as long as I can.

 

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