In the beginning there was no name for the soft slippery thing
inside me — but it demanded to be held. Like a child
that could not be born it snared my first and last thoughts
each day. Soft belly under a sea urchin spine. We hunted
the ocean floor: inseparable.
Anger arrived with each new symptom: a tiny pearl for each grain
tucked beneath a joint. When I was not looking
they melted into saltwater and became
one big, briny drowning risk.
Strong riptide: do not swim.
It lived there — deep behind my eyes, until the last
doctor scooped it out into my hands and bid me
It squirmed and squealed, that little disease
of mine, until I could not bear to hold
it anymore, and together we fled back into
the skin we both call home.
It takes the average patient fourteen years to receive a diagnosis of Ehlers Danlos Syndrome, a genetic connective tissue disorder associated with pain, fatigue, and gastrointestinal issues, among other symptoms. I was one of the lucky ones: it only took me eight years to get my diagnosis.
There is some debate about how common joint hypermobility syndromes and EDS really are, but a recent study in Wales found that approximately 1 in 500 patients have hypermobility issues or one of the thirteen types of EDS. I believe that EDS is not so much rare as it is rarely diagnosed, due to harmful myths about invisible illness, chronic pain, and the ability of patients to narrate their own experiences.
Diagnosis was one of the greatest gifts I ever received. It validated my understanding of my body and opened up treatment paths I couldn’t have accessed without it. EDS patients are often told that “there’s no cure, so why would you want to be labeled with that diagnosis?” To feel your body break without understanding the cause is to drown; to be given a diagnosis, no matter how incurable, is a lifeboat. I know there are thousands of patients still waiting for their lifeboat, and I hope that if you are an able-bodied person or a doctor you will treat them with the respect they deserve. To those patients I say: I see you and I believe you.