Welcome to the Hypermobile Physicist!

A Story of Strains, Sprains, and Other Weird Things

The Hypermobile Physicist sounds like it should be a corny superhero name. I ought to be able to warp spacetime and take down some aliens while executing the perfect uneven bar routine at hyper-speed like some magnificent combination of Dr. Strange, the Pink Power Ranger, and the Flash.

Reality, as usual, is a letdown. I chose the name The Hypermobile Physicist for this blog because I want to write about my experiences with my hypermobility disorder, and I know my training as a physicist and engineer colors the way I view and express my experiences. I am also a lot of other things—wife, sister, cat mom, former competitive softball pitcher, lover of naps on the beach, potato aficionada—but I wanted to keep it to the core essentials, and also that URL would be too long to remember.

I am a PhD Physicist, working now as an engineer, whose collagen happens to be garbage, which is essentially the definition of Hypermobility Spectrum Disorder (HSD) and/or hypermobile Ehlers-Danlos syndrome (hEDS). This garbage collagen has a lot of consequences because it turns out your body has connective tissue everywhere. But the most obvious one is that my joints move farther than they are supposed to move because my tendons and ligaments don’t properly hold my joints together, resulting in chronic pain and frequent injuries. I also have a host of related conditions, including sleep apnea, plantar fasciitis, allergy/sinus issues, asthma, mast cell activation syndrome (MCAS), and anxiety. So even if you are not hypermobile yourself, I hope that you may find something here that you will relate to, especially if there is someone in your life that does suffer from a chronic illness. I hope everyone can find something in this blog that will be helpful or comforting, even if it’s just me saying I am sorry you are having to go through your own extra shit while trying to hold down a job and pay bills and maintain relationships with family and friends and live something like the life you want, or even just survive.

As I imagine many of you have if you are reading this, I have been in pain most of my life. It’s evolved and changed and ebbed and intensified, but it’s been my companion for a couple of decades now. For most of that time, I have carried the blame for it upon myself (I am still too hard on myself, but I am working on breaking this habit). I was clumsy. I was unlucky. I didn’t do enough overall strength and conditioning while I was an athlete. I just wasn’t in good enough shape. I pushed too hard. I wasn’t careful enough.  It did seem like I was cursed with bad genes, which turns out to be essentially true, but it wasn’t satisfying enough of an explanation to prevent me from turning my blame inwards.

As a child I was active in many sports including volleyball, basketball, and fast-pitch softball. As I got older I specialized in softball pitching, playing year round on a tournament team. Throughout my athletic career I suffered injury after injury. Sprained ankles, sartorius strains, patellar subluxations, shoulder growth plate fracture, partial rotator cuff tear. I was in physical therapy pretty much solidly from the ages of 14 onward, and I’d had three knee surgeries by the age of 22. I had frequent sinus infections, bronchitis, and flus, and in high school I developed a “mystery illness” that was best described in the end as mono-but-not-mono, which kept me out of school for nearly four months.

In college and grad school, working through rigorous physics programs, I developed finely honed compartmentalization skills, both physical and mental, to push through anything to do what I needed to do to survive, to achieve, to get that degree and move on to the next step. I didn’t have the time or the resources or the awareness to properly take care of my body. I started having terrible wrist, elbow, neck, and back pain. Overwhelmed, I played whack-a-mole with my attention and treatment. Whatever hurt the most got the most attention and energy, while the rest of my pain was ignored, until it became the top pareto[1] item. I pushed through, suppressed, and compartmentalized most of my pain, but it did start to dawn on me that this wasn’t sustainable.

It took until I was a few years into my career as a semiconductor engineer to start re-considering how I was treating myself and realizing how much I was pushing through, suppressing, and compartmentalizing my pain, both mental and physical.

The first step on this journey was reading Brené Brown’s Daring Greatly, which I did after hearing Karen and Georgia rave about her work on My Favorite Murder. I realized my guiding principle in life was the “Please, perfect, perform” trap, and I didn’t want to live that way anymore. I will find some time to write about this more, but this kicked off a re-assessment of my life. I had already “achieved” pretty much everything I was supposed to- maybe it was time to decide for myself what I wanted to value in life, and part of what I decided to value was myself.

At the same time, I was in a multi-year frustrating journey trying to figure out some severe pain in my right elbow that was just getting worse and worse. I finally had a physical therapist I was making progress with, and she pointed out that my elbows were very hypermobile, and my wrist joints had a lot of laxity, and maybe this was not something to be ignored. She suggested getting evaluated for Ehlers-Danlos syndrome. She also assessed that my old shoulder injuries were likely contributing to my neck and back pain, and possibly my elbow pain. She referred me to a chiropractor who, independently, also suggested I get evaluated for EDS. I had heard of this thanks to the cross section of Science and Disability I followed on Twitter, but it had seemed like too severe a disease to apply to me. I definitely wasn’t sick enough or hurt enough to qualify since my joints weren’t regularly dislocating every time I moved, I had reasoned. But as I looked up more about it online, it started to seem a lot more plausible, so I asked my primary care physician about it. She didn’t know much about it herself but referred me to a Comprehensive Pain Clinic which had a doctor who specialized in hypermobility disorders. And poof! I got a diagnosis and everything was solved!

Just kidding. I was put on a waiting list and had to continue trying to figure things out on my own.

About a year and a half after I’d been put on the waiting list, I finally got an appointment…for six months later.

So finally in May of 2022, this year, I had an appointment with an EDS expert, and it was such a relief. I will devote another post to the details of this visit and my diagnoses, but so much about my life that I had blamed on myself finally had a physical, clinical reason. I could connect everything that was broken about me, and actually get help identifying what to do about it. Since then it feels like I have been progressively re-evaluating my own life experiences through this new lens in which things that made no sense or seemed unconnected are now coming into new focus allowing me to see the connections.

I am excited to be in this new phase of my journey, armed with hEDS and MCAS diagnoses, to better understand my body and learn what it needs to function, and hopefully to flourish. I am here to share that journey with you! Welcome to the Hypermobile Physicist!

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[1] Pareto is a useful engineering concept that has bored itself deeply enough in my brain to become part of how I address issues in my own life. Essentially, it boils down to addressing the root causes of the most impactful problems first so you can pack the biggest punch with the least amount of effort.