My Journey with Hypermobility
by Dr. Sarah Joy Stuckart, PT, DPT, CD
I grew up thinking I was weak.
I got frequent headaches, especially in the summer. I got easily fatigued. I rolled my ankles often. I was sensitive to certain tastes and textures. My swim coach in high school told me the first day of practice he wasn’t sure I’d make it to the other side of the pool, so he walked next to my lane the whole time. Somehow, nobody realized I was hypermobile. Until my biggest injury.
I had been on swim team for a full year, and was winning “most improved” awards, despite my lack of natural skill. One day at practice, I was swimming backstroke. I reached with my right arm, and felt a pop. My shoulder hurt, but I didn’t see anything wrong and I could still move it. So I paused, swam slower, and just avoided things that hurt. I did that for a few months before one of my teammates said I should see a physical therapist. When I finally saw that PT, he noticed my hypermobility right away. He didn’t call me weak, he told me how to get stronger. He didn’t say hypermobility would limit me in my goals, he said he wanted to see me at the Olympics. I loved being in the clinic. I got stronger, my shoulder was hurting less, and I started considering myself an athlete.
That physical therapist spent every minute of my appointments telling me that I should become a PT. He explained shoulder anatomy and techniques as we worked, he quizzed me on biology facts, and he let me observe and later work in his clinic. Eventually, he won me over and I decided to become a physical therapist. Though my shoulder got immensely better, while in college I reached back behind me for a water bottle and felt another pop in my shoulder. I didn’t know until later that I had subluxed my shoulder. It had come slightly out of its socket as I reached, and when I felt the pop and yanked my arm forward again, I had put it back in place. I got an MRI, and it showed osteoarthritis at age 19. That was wild to hear, and made me feel weak again. My physical therapist, ever my supporter, told me to see the head team physician for the Seahawks and the Mariners. Thank goodness he did, because that surgeon not only did a procedure to help with the missing cartilage in my shoulder, but he also tightened my shoulder joint so it wouldn’t sublux again.
I wasn’t your average teenager after surgery. I didn’t rest or watch TV. The afternoon of my surgery, still slightly loopy on pain medication, I went to see my physical therapist. No appointment, just went and hung out. I knew then that I’d made the right career choice. I did physical therapy after my surgery, got stronger, and this time the results stuck. I was able to do everything I wanted to do with my shoulder. I still got fatigued, I still got headaches, but I felt strong. I worked hard to become a physical therapist, and kind of forgot about my hypermobility.
Until one day in PT school, when I did a thumbs up in class and had a professor come running over to ask me what was wrong with my thumb. I had never noticed anything odd with my thumb… Apparently, thumbs extending backward isn’t normal. When that’s your normal though, it’s easy not to notice. So I continued to not pay attention to the signs my body was giving me.
After two years of being a physical therapist myself, I saw a short video online talking about POTS. The symptoms it described sounded oddly familiar. I started researching the condition, and things started to click. I did the “poor man’s tilt table test” at home and it was positive, so I went to see a cardiologist who confirmed the diagnosis. Great, I’m in healthcare, we get a diagnosis and then we treat it. So what was the recommended treatment? Salt and water. Not the fanciest treatment option. I continued looking for answers online, and found that while salt and water are indeed vital for managing POTS, doing exercise and being specific with the type/pace/intensity is important too.
I had an epiphany at the top of a waterfall in England. I was worried about others judging my slow pace, but decided I should take breaks as I climbed up Malham Cove. I did, and after a minute of rest and photos at the top, I continued hiking several miles, stopping to drink a juice in the shade when I started feeling a headache. Once it eased, I continued hiking and climbed up the Gordale Scar to the top of the waterfall. I again stopped to rest, and then continued to hike several more miles. It was one of the most physically active days I’ve had, and I felt great! Not because I pushed myself, not because I gritted my teeth, but because I gave myself permission to rest and do it in the way that worked best for my body. That permission felt like it set me free.
One day in the clinic, a woman came in who looked nervous. Her shoulders were curled forward, she talked quietly, and several minutes into the appointment she said, “…and I’m hypermobile…” I just said, “oh, me too!” and her shoulder tension released, her eyes lit up, and she said, “so you believe me”. That was a pivotal moment for me. It made me realize how few people are believed when they say something isn’t “normal” with their body, and how long the journey to find a supportive healthcare provider is. So I started being open about my hypermobility. I discussed it with other hypermobile people, I started volunteering with hypermobility-specific groups, and I learned how to be an even better PT for hypermobility and POTS.
Today, I co-own Vivian Joy Physical Therapy and we created a space where people who are hypermobile, have EDS, POTS, or MCAS, or have chronic pain and fatigue are not only believed, but supported, and treated as part of their own healthcare team. I love working with people who are hypermobile. And while we each have a different journey and hypermobility can present in different ways, I’m glad that sharing my personal and professional experience can help people achieve more in their own lives.
