04/08/2025
I was reminded reading this piece on the Mighty of sitting in the café of one of our local hospitals and overhearing a conversation that went like this:
A young woman sat down at a table with her father. After a moment or two I heard her say how she almost wished she had a serious car accident so she could be properly assessed and have the issues she was experiencing identified so she could receive treatment.
She was in a great deal of physical pain and had just seen a medical professional who had fobbed her off with a wrong diagnosis.
After waiting many months and having hoped for answers and a treatment plan to receive some relief this young woman was understandably distressed and frustrated.
Despairing even.
We got talking and I explained how I could relate to her experience personally and how I studied and trained to help people living with Ehlers Danlos Syndrome and Hypermobility Spectrum conditions to have a better experience of living in their bodies.
I offered suggestions of where to look for further information and access resources to empower her to help herself.
I could relate to her story not least because it took me years of experiencing issues including chronic pain, self referring for physiotherapy, osteopathic and chiropractic treatment practicing yoga and spending hours in the gym experimenting with what helped, figuring out a program that worked for me practicing pilates as well as yoga and bringing in specific strength, resistance and mobilisation training to see a significant difference and shift in the way I felt.
Then a relatively minor car accident reignited head and neck pain from a previous injury and I got referred to the MaxilloFacial department, again.
It took seeing a top head and neck trauma surgeon to have my issues taken seriously and properly investigated.
After years of asking.
This lead me to (again) request a referral to rheumatology to be assessed for a hypermobility spectrum condition.
Like so many others before and after me, this process was not without pitfalls and difficulties: it required perseverance and determination.
Sadly some version of this story is a common experience for people living with what is largely an invisible condition.
What often isn’t invisible is the pain people are in: if you look you can see it in someone’s face, if you watch them move you can see how they hold themselves taut, braced against pain or injury.
Often people move more or fidget about because being still is more taxing and less stable: sitting, standing or lying still typically increases pain or discomfort.
Below people describe what Ehlers Danlos Syndrome feels like.
As always each person’s experience is different in presentation and severity.
There are various subtypes and whether someone was correctly diagnosed and able to access appropriate care and support has implications for their pain, management and treatment.
Not to mention their mental health.
Years of having debilitating symptoms minimised or dismissed, put down to life stage or age is damaging and in itself traumatic.
As a condition that affects connective tissue throughout the body, any and all tissues can be affected, including brain tissue, joints, ligaments, membranes, muscles, organs, skin, systems, tendons, even bones in one subtype.
All bodily systems are involved, especially digestive, pulmonary and cardiovascular systems also reproductive and genito urinary systems (bladder, bowel, kidneys reproductive organs etc.) and nervous systems.
Symptoms often present in a cluster or constellation and seemingly unconnected issues often share a common connection - connection tissue.
Ehlers Danlos Syndromes and Hypermobility Spectrum Disorder conditions are heritable connective tissue disorders.
Athletes, creatives, dancers, gymnasts are commonly hypermobile and have variation in yhe their connective tissue consistent with a connective tissue disorder.
As are ADHDers, Autistics and entrepreneurs innovators.
My belief is that the ability to think flexibly and creatively requires more flexible connective tissue.
I don’t have evidence for this, it’s a just a hunch.
“It’s like riding a bicycle with very loose bolts.”