For those with a hypermobility condition (Ehlers Danlos Syndrome – EDS or Hypermobility Spectrum Disorder – HSD), it’s a bit like wearing a special magic cloak – one that masks their real condition to the outside world.
To the casual onlooker, being hypermobile (having the ability to extend joints beyond their normal range) can only have benefits – surely having that level of flexibility is what everyone desires right? To the inner circle of close family and friends though, they know that impact of EDS/HSD is far more wide ranging…filtering through to every area of the body with a multitude of disabling symptoms.
EDS/HSD is a genetic condition that affects the connective tissue in the body. In the hypermobile body, the connective-tissue (a form of collagen) is fragile and stretchy.
EDS/HSD is a genetic condition that affects the connective tissue in the body. In the hypermobile body, the connective-tissue (a form of collagen) is fragile and stretchy. The most visible impact on the body of stretchy connective-tissue is that of the joint flexibility and sometimes stretchy skin too. However, as connective tissue lies in every fibre of the body, segmenting and supporting muscles and organs (and the very layers of the muscles/organs themselves), then, the true impact of symptoms is multi-systemic. Symptoms can impact the heart, the digestive system, the womb, the bladder, the bowels, the neurological system, the immune system, to name just a few. All in addition to the chronic joint pains and chronic fatigue. These extra symptoms are hidden to all but those who are nearest and dearest – the invisibility cloak seems to have an amazing skill of keep these symptoms out of view. The level of impact of symptoms varies, there are many areas of similarities and overlap, but no one single person is affected in the same way (hence why the conditions are also known as spectrum disorders).
Living with EDS/HSD is like being chased.
Living with EDS/HSD is like being chased. Keeping well and symptoms to a minimum takes hard work, diligent commitment to exercise, commitment to diet and supplements and for some, medication too. And when you are running hard, keeping that distance in the chase, you are managing to work, enjoy family life and enjoy doing whatever your choose to do…just a ‘normal’ contributing individual in society. To everyone in the outer circle, a hypermobile person looks just fine.
However… despite all the hard effort, there are just days when the EDS/HSD will catch up in the race. On such days, symptoms will be at their worst, but on those days, the hypermobile person will often be out of view, too unwell to leave the home and taking advantage of much needed rest. The next time they emerge, all is well again and to the work colleague, co-worker, person in the street, it is difficult to see what could possibly be the issue – the invisibility cloak doing its magic again. How often the ‘bad days’ occur and for how long the symptoms stick around, is again, dependent upon the individual, and their own personal journey.
Having HSD myself, I still have days where HSD catches up with me and I simply have stop and listen to my body. To give you an example of how HSD can impact on someone, I’ve written another post, you can read that post by clicking here.
Also, If you want to find out more about hypermobility and links to other websites then pop over to the ‘hypermobility info’ section of this website.
I’ll finish this post by saying that I hope I have provided you with some awareness of this condition. And maybe it reminds us that not all conditions and their symptoms are visible. I’ll always lend an ear to those who need it and provide a chance for a bit of a giggle… because life is all that much better when we are smiling.
As a Pilates coach who specialises in rehabilitation, especially in chronic conditions such as EDS/HSD, I am passionate about sharing how Pilates helped me and I love helping others to move forward in their journey too. I have made enormous progress with my HSD with my commitment to Pilates. Maybe it can help you too.
Keep smiling one and all and have a wonderful day