Published: 16/04/2020

I never connected my issues because I was told that EDS is “nothing to worry about”

CW: Contains discussion of self-harm

When I was 15, my mother took me to a pediatric gastroenterologist. I had been struggling to keep down food for two years: I had been diagnosed with gastroparesis and I had started to struggle with body dysmorphia. 

When the Gastroenterologist came into the room, I was pulling at my skin and telling her that I was fat due to my body dysmorphia. At one point when I was at my lowest, I even tried to cut the skin off of my body with scissors. When the gastroenterologist looked at me, she asked me to stand up, measured the ratio of my height and arm span, looked at my skin and flexibility, and told me that I had something called ‘Ehlers-Danlos syndrome’ (EDS).  This was 17 years ago, and at the time, she told me that “it was nothing to worry about, a lot of gymnasts and dancers have it”, and it just meant that I was incredibly stretchy and bendy. As a result, I never mentioned the fact that I was given this diagnosis to another doctor until this past year.

Over the course of the past 17 years, I have dealt with gastrointestinal issues, been diagnosed with SIBO, gout, hypothyroidism, and I’ve been hospitalized for chest pain which was called pleurisy, sprained my ankles, woken up to bruises, dealt with migraines, been diagnosed with vasculitis, and gotten dizzy to the point of blacking out. During all of this, I never thought to bring it up to a doctor, never put the issues together, and never thought that my diagnosis of EDS may have been contributing to each of the other issues I was experiencing. 

When we moved to South Carolina, I finally did bring it up with my primary care physician. She had no idea what I was talking about, no idea what Ehlers-Danlos syndrome was, what SIBO was, and she had no idea why I was requesting to be seen by a cardiologist for a tilt table test. When I told her that I suspected I might have PoTS she asked why I thought that. When I told her that my blood pressure at every doctor’s appointment is relatively low, that I’m always cold, that I don’t sweat, and that I black out a lot, she still didn’t refer me to a cardiologist. 

I have since made appointments with a cardiologist, rheumatologist, and gynecologist on my own. I have contacted people who have EDS and asked for referrals, joined a Facebook support group for EDS, and have my appointments in the next month. I am hoping to finally get all of these issues connected, because when you’ve seen multiple doctors, and been told by multiple people that “nothing is wrong, that it’s all in your head”, or that it’s just IBS, or depression, or anxiety, it can get tiring. 

Yes, I struggle with depression and anxiety, and yes, I have IBS, but I know my body, and I know when something is wrong. I’ve learned that if we don’t advocate for ourselves, if we don’t insist and continue searching and reaching out to other people who struggle, then it can be very easy to feel hopeless and alone and to start to believe that maybe the issues are in your head. 

It is so important to remember that we as human beings know our bodies, we know what feels right and we know when something feels wrong. I strongly urge everyone to fight for themselves, and their health, because the system is broken, and it’s easy to fall between the cracks, and when that happens, it’s hard to find your way back out.

Virtual Support Groups

Let’s Chat

Would you like to speak to others living with EDS and HSD but can’t get to any support group meetings, events, or conferences?

Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.

Related Stories

View all Stories

Sign up to The Ehlers-Danlos Society mailing list