Hypermobile Ehlers-Danlos Syndrome (hEDS) is part of the intricate tapestry of my life; a unique thread weaving my story through the fabric of existence. My thread is not always visible to the naked eye. To the outside world, I may appear healthy and able-bodied, but beneath the surface lies a constant battle with my own body.
Ehlers-Danlos Syndrome (EDS) encompasses a group of connective tissue disorders, each presenting its own set of challenges. There are 13 classifications of EDS; among them, hEDS stands out for its hallmark feature: joint hypermobility. For me, this translates into joints that defy the typical boundaries of flexibility, often leading to dislocations, chronic pain, and a host of other symptoms that can vary widely from person to person.
hEDS: the path to a diagnosis
Growing up, I was no stranger to aches and sprains. I was, and still am, extremely accident prone but it wasn’t until adulthood that the puzzle pieces started to fall into place. After years of seemingly unrelated symptoms (joint instability, digestive issues, and unexplained fatigue) I finally received a diagnosis that explained the complexities of my body’s inner workings.
After my son was born my body was, shall we say, broken. I wasn’t healing very quickly. I put this down to the fact that I had had a precipitous labour. I just assumed that my body, having gone through so much so quickly, needed a little more time to heal. By this point I was 23 years old and had had limited contact with my biological family. It was during one of these conversations that I found out that my biological mother had a condition called EDS and that it was genetic. This prompted me to seek out answers as to whether it was possible that I too had the same condition. Turns out I did.
As is very common with people with EDS, a diagnosis doesn’t come easily. After all, it’s not easy connecting the dots when you are presenting with clumsiness, joint dislocations, pain all over your body, digestive issues and even gynaecological issues, to name just a few of the comorbidities.
Acceptance and grief
Accepting a chronic condition is a journey in itself. There are stages of grief, moments of denial, and an ongoing negotiation with one’s own limitations. I already had one lifelong condition under my belt at this point, so I suppose for me at the time of diagnosis it didn’t overly phase me. Sure, I was confused, and I had no clue what EDS was, but I didn’t get that gut punch that a lot of people get. That was to come later and would repeatedly hit me like a steam train at different stages in my life.
Of all the things this condition has taken from me this is the most painful to face. From a very early age (about five years old), I started playing the piano, then at around seven I started playing the violin. I was always singing early on too.
Music was always a part of me. I often say I wouldn’t be surprised if I came out of the womb singing. I took grades in piano and violin and took GCSE and A Level Music. Music wasn’t just something I enjoyed, it wasn’t something I loved; it was something that ran through my veins and it still does. It is a part of my very soul.
Music lost and found
Being hyperflexible was great for a pianist – capable of stretching more than one octave – and curly fingers were great for the violin. I sang and played everything from classical music and opera to jazz and musicals and the occasional pop/rock song. But gradually arthritis kicked in and I could no longer play the violin or the piano like I used to and certainly not without excruciating pain. I could still sing and so I did with all my might, and I channelled myself into that alone.
Then my voice started to be affected. I could no longer hit the higher notes. The pain was intense when I did and then came the damage to my vocal cords. I had lost it all, cruelly in my twenties, and what I lived for was gone. I couldn’t listen to music after that. For months it was too painful, and I sank into a deep depression. Music was what kept me going through bad times and it had been taken from me. I was grieving.
One day I turned on one of my favourite songs with some trepidation. The pure joy I felt in being immersed in it all over again was intense. I still grieve my loss, but I have re-found my love of music. Someone recently encouraged me to see if I could still sing. I could barely speak after the first time, but I kept going with the encouragement and faith this person had in me. There is hope that I may still have something left and I will hold on to that, because for all the lows this condition gives you, for all it takes away, it also teaches you to find the good in everything you do.
Navigating the healthcare system
Living with hEDS means learning to dance with uncertainty, to embrace the ebb and flow of good days and bad, and to find beauty in resilience. One of the most challenging aspects of hEDS is its invisible nature. This invisibility can lead to misunderstandings and misconceptions, making it even more important to advocate for myself and raise awareness about this often-misunderstood condition.
Due to the rarity of this condition, I find myself having to explain to doctors with puzzled faces what it is, why I cannot have certain local anaesthetics, or why they need to be careful with certain procedures. This is an experience that a lot of people with EDS have and the EDS Society has created a GP Toolkit.
People with EDS are referred to as ‘zebras’. The term zebra is ascribed to rare conditions or diseases in medicine to avoid misdiagnosis, because while zebras may be rare, they do exist. This term has been adopted worldwide now and is used on social media platforms to raise awareness and to bring the community together.
What I have learned
Living with hEDS has taught me to appreciate the small victories – the days when I can move with ease, the moments of clarity amidst the brain fog, and the strength that comes from facing adversity head-on. It’s a constant balancing act of listening to my body, pacing myself, and practising self-care in its truest sense.
Despite the challenges, there is beauty to be found in the journey with hEDS. It’s in the connections forged with others who understand, in the resilience that grows from adversity, and in the appreciation of the simple joys of life. My journey with hEDS is just one thread in the vast tapestry of human experience, but it’s a thread that has shaped me in ways I never could have imagined.
Friends of Bylines Network
There has never been a greater need for grassroots journalism that investigates the stories that really matter, holds power to account and champions the voices of everyday citizens. We are proudly powered by volunteers but what we do isn’t free.
STAND WITH US for independent, citizen-led journalism that makes democracy stronger, and you will even get some exclusive benefits.
