What I Mean When I Say I Have Joint Hypermobility


“Maybe you should join the circus if you’re that flexible,” is a response I’ve received when I’ve told someone I have joint hypermobility. While I know this is generally meant to be lighthearted and humorous, I can’t help but feel it trivializes the challenges I experience on a daily basis.

I do often describe joint hypermobility as “being more flexible than the average person” just because it’s the easiest way to describe it without getting too scientific. However benign being flexible may be for some, there are for others whose joint hypermobility causes debilitating pain that makes the simplest tasks feel strenuous.

Like many chronic health conditions, joint hypermobility exists on a wide spectrum, but most people only see it as a problem if you’re using a wheelchair or other equipment for support. For others, for people like me, we’re “invisible.” We can only tell people how we feel. Even then, words can’t completely express the frustration of feeling like your body is dysfunctional.

I didn’t even know I was hypermobile until I saw an occupational therapist earlier this year. I was referred by my primary care doctor after I experienced recurrent carpal tunnel syndrome for almost a year. During my initial appointment, I also found out I had tennis elbow and thoracic outlet syndrome. I learned a lot of techniques to mitigate the pain, yet it still persists.

“What caused all this?” you may wonder, as I did. Apparently using my computer at work, something my coworkers can do with little to no issues. I was perplexed as to why this was happening to me, being the youngest employee and only about a year and a half into my job. When I posed this question to my occupational therapist, she told me I was hypermobile, a term that was unfamiliar to me. She asked me to move various parts of my body, and apparently the vast majority of my joints extended beyond what was considered a normal range of motion. Because I have weaker connective tissue holding my joints together, I’m more prone to injury.

Learning I’m hypermobile seemed to open a Pandora’s box of symptoms I had never experienced. The pain spread to virtually every major joint and muscle in my body. From head to toes and everything in between.

When I say I have joint hypermobility, I mean driving for too long causes pain in my knee and foot. I mean sitting for long periods of time causes tension in my lower back. I mean sleeping in the wrong position can result in a sore neck and shoulders that lasts the entire day. I mean I have to use ergonomic computer equipment and constantly be aware of my posture as I work. I mean my fingers start to ache when doing repetitive motions such as using my phone or typing on a keyboard, as I am right now. I manage my pain with a cocktail of ibuprofen, heat, ice, compression, stretches, and rest. I do things every day to manage or prevent pain the same way others brush their teeth and make their bed.

Sometimes even all that is not enough.

Many people may deal with any of the aforementioned symptoms for a variety of reasons. But people without joint hypermobility or a chronic illness likely do not experience this pain every day. Try having to deal with one, sometimes more than one, on a daily basis. I often wake up wondering which part(s) of my body will be in pain today. It makes living in itself exhausting.

I’m grateful that, at this point in time, I’m able to manage my pain and still function. I know that isn’t the case for many people experiencing chronic pain. Regardless of where you fall on the chronic pain spectrum, I want you to know that you’re stronger than you think. Whether your symptoms come and go or remain constant, you can only become stronger as you live through each day.

I often worry my pain will worsen as I age. But instead of thinking “”What if?” or “Why me?” the best thing I can do is take care of myself and keep making the best of what I have.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: agsandrew

TOPICS
JOIN THE CONVERSATION

Related to Joint Hypermobility Syndrome

watercolor painting of woman in a wide-brimmed hat

5 Things I Want You to Know About Hypermobility

There are a lot of aspects of having hypermobility syndrome that cause my life to be different from others. I might do things a bit differently, move slower, go out less, hide under the covers over the weekend instead of going to see friends or family. People looking at me and my life from the outside may not be able to [...]
woman lying in bed looking frustrated and in pain

When My Joint Hypermobility Flares Before I've Even Left for Work

It’s 7:00 a.m. and I’ve just woken up with my alarm, well-rested and feeling ready to start the day. Today I feel good. There’s no pain yet. I feel full of energy and I’m determined to make it to work. I go to the kitchen and put the kettle on for a cuppa. My iPod’s playing [...]
young woman sitting on a rock overlooking a valley with text saying 'when chronic illness gets you down'

The Mental and Emotional Side Effects of Chronic Illness

A big part of chronic illness is, of course, the physical aspect and what effect these types of illnesses have on our mobility and the other various physical symptoms that come with the territory. However, what most people forget about is the mental aspect of chronic illness. Yes, the physical effects are hard, but sometimes you [...]
Little girl doing therapy, she is in a roller tunnel reaching for toys while therapist keeps roller steady

Why Funding for Programs That Help Kids With Physical Disabilities Matters

My daughter, Tiny Miss H, has joint hypermobility syndrome and hypotonia. It means she isn’t as physically able as her peers. After years of intense therapy, she has technically reached her major milestones, but she is neither confident nor consistent with her abilities. As a result, mainstream activities are often not suitable for her. We work hard on [...]