Content warning: chronic pain, medical negligence

I limp down to my regular spot by the school canteen as my friend Michelle comes bounding over to me.

“You missed P.E. AGAIN today!” She exclaimed. “Everything ok?”

“Yeah, I just rolled my ankle again.” I say, with a defeated sigh.

“Again!? Wow, you’ve been so unlucky this year!”

“Not really unfortunately.” I respond. “I’m extremely hypermobile, so I’ve basically always been this prone to injuries.”

“Oooo” said Michelle excitedly. “So did you used to be a gymnast or something?”

I stare back at her with what I can only imagine was a slow blink of disbelief, genuinely having no idea how she could have come to this conclusion. “Um…no. I’ve always been hypermobile, so high impact sports have never been good for me.”

“Oh.” Said Michelle, slightly disappointed and probably just as confused as I was.

Had I been properly educated about my condition growing up, I could have easily identified what went wrong with this conversation. My well-meaning friend had made the common mistake of equating mobility with flexibility.

Most simply put, flexibility is the distance your muscles can stretch before contracting back into their original position. Flexibility is influenced by several factors including physical activity level, age, gender, body temperature and body composition. It is also a skill that can be trained through a a mixture of dynamic and static stretching, as well as a balanced approach to your overall health and fitness.

Mobility on the other hand, is the ease with which your joints can move through their range of motion. Hypermobility by extension, is the ability of your joints to easily move through an abnormally large range of motion. For example, being able easily roll your ankle to the point where it causes damage to the surrounding soft tissues.

A healthy level of mobility can actually help you develop the flexibility of your muscles and is important for avoiding stiffness and injuries. There are also certain circumstances where Hypermobility may be developed through rigorous training, for example, dancing at an elite level. However, for many hypermobile people, it is an inherited trait that is more of a hinderance than a help.

During high school, not even doctors seemed to understand this distinction. Several tried to evaluate my level of hypermobilility by trying to stretch my hamstrings back towards my ears (???) and told me the solution to my problems was to stretch MORE! But of course, for my body, stretching more didn’t meaning stretching more deeply, it meant pulling my joints to the very edge of their range of motion, making it look like I was stretching further whilst actually making me more prone to further joint dislocations.

Many years of useless appointments and awkward conversations like the one I had with Michelle left me with quite the complex. Why couldn’t I stretch properly? Why couldn’t I do the splits? There were plenty of students at my school who could do that and they didn’t even have a “condition”, so surely what I had couldn’t be THAT bad right? So why was I coming home in tears because I couldn’t take the pain anymore? Why couldn’t I hop on the monkey bars without my elbows sliding out of their sockets?

A year ago, I discovered that I was not in fact “just” hypermobile, but that I had Hypermobile Spectrum Disorder (formerly know as Joint Hypermobility Syndrome). This disorder is linked to the Ehlers-Danlos Syndromes and can affect the structure of the body’s soft tissues. This can not only cause problems with widespread chronic pain and joint dislocations but also problems with the skin, heart, blood vessels and digestive organs, just to name a few.

(This family of disorders affects different people in different ways and to different extents. It is too complex to go into an appropriate level of detail about the Hypermobility Spectrum here, but you will find an article from the Hypermobility Syndromes Association linked below, which gives an excellent introductory summary to this.)

Ironically, one of the main pieces of advice I have received from the team now heading up my rehabilitation is to limit how far and how often I stretch. Increasing the flexibility of my muscles is not an asset to me like it would be to a gymnast or a dancer. There is too much potential to inadvertently loosen my joints further, inhibiting my body’s stability and proprioception, and putting me at risk of injuries and falls.

While the confusion between mobility and flexibility may seem harmless at first, it is my firm belief that it leads to real problems. From public perception that Hypermobility is always harmless or even desirable, to doctors and physical therapists who do not know how to diagnose or treat Hypermobility related disorders, to the patients themselves, who may not understand their own bodies and therefore not know how to advocate effectively for their own care.

So next time you find yourself having a conversation like the one I had with my friend Michelle, do better than I did. Let them know that there is a difference between mobility and flexibility and that there are circumstances where being hypermobile is in fact a medical condition that can be accompanied by many complications. Help spread awareness about the complex and challenging nature of Hypermobility related disorders and help us all be better understood and cared for.

Further reading:

The Healthline website provides a clear explanation of the difference between mobility and flexibility and how healthy individuals can achieve a balance of both for overall health.
https://www.healthline.com/health/exercise-fitness/why-you-dont-need-to-be-gumby-mobility-vs-flexibility

The Hypermobility Syndromes Association website provides a great explanation of the difference between Hypermobility, Hypermobility Syndrome, Hypermobile Spectrum Disorder and the Ehlers-Danlos Syndromes. I think it’s a great first read for someone newly diagnosed with a Hypermobility related disorder or for their loved-ones. https://www.hypermobility.org/what-are-hypermobility-syndromes

The Ehlers-Danlos Society website is a phenomenal resource for in-depth information about Hypermobile Spectrum Disorder and the different variants of Ehlers-Danlos Syndrome. This is the place to go to find out more about specific symptoms, diagnostic criteria, news, research and a global database of Hypermobility friendly professionals.
https://www.ehlers-danlos.com/