Why I Felt Like a Lost Sailor Without My EDS Diagnosis

A little over a year ago I was diagnosed with Ehlers-Danlos syndrome, hypermobility type. Until I received that diagnosis I was like a lost sailor, washed overboard and floundering, barely keeping my head above water. My pain levels have increased so much over the last few years that I was starting to think what was wrong with me was all mental and not physical at all!

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I grew up idolizing my older brothers. Whatever they did, I wanted to do, too. I was very small for my age, all the way through high school. Everything I did trying to emulate my brothers was made even more difficult by my small size. I compensated by working extra hard…and developing a very good sense of humor! The more you try and fail, the more people want to laugh at you, the more you need to learn how to make the best of it. I found that I could make people laugh with physical comedy like I had seen my favorite comedians use. Jerry Lewis, Abbott and Costello, Laurel and Hardy, Red Skelton, Dick Van Dyke and Tim Conway were hilarious in my eyes, and I tried to be like them, no matter how painful. Being super flexible helped, and learning how to fall properly was a life saver.

Trying to be athletic like my brothers and funny like the great ones meant I was always in some kind of pain. Whenever I complained about it I was told to suck it up and act like a “big boy, “man,” and “stud” instead of a “baby,” “wimp,” or “loser.” My brothers never complained about being in pain and their bodies apparently didn’t bother them the way mine did me, so naturally everyone thought I was just looking for sympathy or was very weak. Even when I became as good a gymnast as my brother, and even when I ran more than 30 thousand miles and 30 marathons, including Boston three times (something no one in my family ever did), I felt weak and inferior because I was always in so much pain.

I was able to tell myself the level of pain I endured was because I was pushing my body so hard all the time. I managed to get myself into great shape and stayed that way for many years. It was only after 11 surgeries in seven years that I finally had to stop pushing so hard and cut myself some slack. Still, I was convinced my level of pain was either abnormally high, or I was as soft as my brothers always told me I was. I was more inclined to believe the latter.

Two years ago my physical therapist told me about something called Ehlers-Danlos syndrome (EDS) and recommended that I go to a specialist she knew of in the Denver area. I got my referral, made my appointment and, after waiting for just over a year for that appointment, was officially diagnosed with EDS. I was given some information and told there was no “real” treatment and no cure and that my pain wasn’t going to stop. I’ve been going to a pain clinic for something like four years now and I can’t imagine what my pain would be like without it!

The pain medication helps the physical part, to a point, but the mental part is still so very hard to take. Cutting back on my exercise routine has been hard because I was used to running and doing core work six to seven days a week. My pain has gotten so bad now that a “good” week for me is when I can workout three days out of seven. I know, there are a lot of people who can’t do even that much, and I honestly do feel lucky that I can stay as active as I am, but cutting back so much has been a huge adjustment. I’ve been depressed and am still mourning this life change.

Mostly, though, I’ve been searching for answers. I’ve had so many questions about why I hurt so much and why it doesn’t go away. I want to know why this has happened to me when I worked so hard to be active and fit and healthy. I want to know why I had to stop running when I loved it so much!

The more I’ve read on the internet in forums like this one, and from support groups, and from looking for information anywhere and everywhere, the more I feel little things falling into place and starting to make a little bit of sense. Being able to put a name and diagnosis to my pain was like finding the key to a puzzle that I’ll never be able to solve. I have a lot of answers but no solution. Things I’ve dealt with all of my life at least make sense now, even though I’ll probably never be able to accept them.

Yes, there are worse things that could happen in a life, but that doesn’t make this any less fair. Until I can’t do it anymore I’ll keep searching for those answers and, maybe, someday, I’ll find something that will make a real difference. So keep posting, sharing and hoping and helping, and I’ll do my best to do the same.

Getty Image by mudbabyphotography