Published: 28/08/2020

My doctors could not see past my eating disorder

TW: Contains discussion of eating disorders

I will be 30 years old in October 2020, and I was just diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). Ten plus years ago I fell ill, and never got better. I had no idea what was wrong with my body.

I was a professional cross-country skier for the Junior Olympic and World Junior teams for the USA. I trained 3-6 hours a day and was in the best shape of my life. In 2009 I developed compartment syndrome in my lower legs from overtraining, so I had surgery to release the pressure in my leg muscles. Unfortunately, the first surgery didn’t work, so in 2010 I had another bilateral lower leg fasciotomy. This time it worked and I have not had issues with my lower legs since.

However, about eight weeks after surgery, I became extremely ill – I couldn’t hold down anything solid or liquid. I lost 30 lbs of muscle in the 3 months it took to find out I had gastroparesis and colonic inertia. I was put on laxatives and motility medications and sent home, devastated that my athletic body was now a skeleton. I continued to get sicker, and I had to stop training and racing in 2013. I had to give up on my dream of going to the Olympics. It still hurts to know I lost what I worked so hard for, but such is life.

In 2017 I went back to the clinic and saw a GI doctor who advised I get an ileostomy for my chronic constipation, colonic pain, and issues with having no nerve sensation in my anus. The ileostomy was a brutal surgery to recover from, but it was worth the pain. I am no longer on any laxatives and I am no longer in chronic abdominal pain.

In 2019 I went back to the clinic for the unintentional vomiting and nausea I experience on a daily basis. I say “unintentional” because many doctors have tried to push it all onto my mental health diagnosis of anorexia. However, I know the difference between intentional vomiting, and unintentional vomiting, and what I experience now, in eating disorder recovery, is unwanted and unintentional.

Since 2012, I have been to eleven inpatient and residential treatment centers for anorexia, and have been told all my symptoms were caused by anxiety. The last time I was in treatment, I was isolated in my room alone for three weeks to try to make me so uncomfortable I would stop vomiting; but I couldn’t stop vomiting, because I can’t control it. They also tried drugging me with benzos to sedate me to see if I stopped vomiting when my anxiety was down. All this did was cause me to puke on myself in my bed, and almost choke on my own vomit. I would eat something for an evening snack, vomit, go to bed, and then wake up at 5 am puking the remanence of whatever I had eaten 10-15 hours prior. 

I was told on a daily basis, ‘you’re too sick to be helped’, ‘getting a feeding tube for an eating disorder is a little extreme’, ‘you’re more capable than you think’, ‘you have an eating disorder. Nothing else is wrong with you’, and  ‘all your vomiting is in your head’.

They tried to crush my spirits. I was not allowed outside for five weeks until I was administratively discharged because they realized they couldn’t support me.

These treatment centers didn’t know how to treat me, because I wasn’t dealing with a typical eating disorder. I have hEDS, gastroparesis, and a whole host of diagnoses that go along with them: hyperadrenergic PoTS, MCAS, CFS/ME, Asthma, Hashimotos (Autoimmune). Now that I know what is causing all of my symptoms, I feel like I’m able to better steer my recovery journey outpatient. My geneticist is referring me for a neurologist consult for a possible CSF leak, as I have all those symptoms too.

Now that I have my answer, I’ve been helping others with similar issues find answers through doctors and research. I’ve helped two friends get diagnosed with hEDS since my diagnosis in March 2020. I feel envious when a friend gets a diagnosis early on in their struggle with illness because it hurts that I had to spend ten years suffering, and still suffer severely. And yet my friend gets diagnosed within 5 months of falling ill. 

But I have to remind myself that I am the reason my friend got diagnosed and didn’t have to suffer severely, and that brings a smile to my face. I hope to someday open a treatment facility for patients struggling with EDS and eating disorders because I don’t think any treatment center does a good job of treating these two illnesses in conjunction.

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