Learning to live with Hypermobile Ehlers-Danlos Syndrome (hEDS) is not for the faint of heart. Everyone’s journey to diagnosis and beyond is completely individual. I would argue that while we share some similarities in our stories of how we got to our diagnoses…there is a vast difference between those who grow up ‘sick’ and those of us who lived our lives with a set of symptoms without benefit of a diagnosis. Here is my point: if you grow up knowing you have hEDS from the day you are born…that IS your normal. But what happens when you grow up not feeling well but you are still functional (friends, school, jobs) and THEN the syndrome progresses?? My supposition is that those two journeys are distinctly different.
I can’t speak to growing up knowing you have hEDS from a young age but I can share what it was like being diagnosed at age 36 after searching my entire adult life for answers. Initially, there is a honeymoon period after diagnosis where you are just so stinkin’ happy to have a name to put on your symptoms. Someone actually believed you after, what is most often, many years of belittling, doubting docs telling you that all you need is psychiatric care! This ‘diagnosis high’ as I call, can last anywhere from a few days to years. For me it was the latter. I was so relieved and astonished and happy that after 18 LONG years, someone had actually validated my symptoms. But what happens after that??
I was fully functional at the point of diagnosis…I had a job and friends and a life. Did I have pain and skin issues and digestion issues?? Sure, but they didn’t stop my life. Probably, the best gift I was ever given was from the rheumatologist who made the diagnosis. She said, “I think this is what you have, (handed me an article on Benign Joint Hypermobility Syndrome, which was what hEDS was called back in the day) it’s not life-threatening so go out and live your life.” And I did!
Four years later at the age of 40, I was unable to stand or walk for more than a minute. But imagine what might have happened if my doctor told me that this was coming?? She didn’t know if I would be one of the unlucky ones whose symptoms would progress or rather, remain benign. She gave me the gift of four years full of life because she didn’t assume the worst and plant seeds of worry in my already overactive brain!!
When I turned 40 and my body started breaking down, I had my first appointment with Dr. Brad Tinkle, world-renowned geneticist and expert on The Ehlers-Danlos Spectrum disorders. This guy wrote the book on hEDS…literally! I was skeptical as I went into our first appointment and even passive aggressive. History had taught me that best-case scenario, he would be aware of the topic, but have no helpful insights and worst case scenario, he would belittle my symptoms and demean my intelligence with a smug comments that would make Napolean look like Pollyanna.
Lucky for me he was patient and kind, and took over an hour to talk to me about hEDS and what this meant for my future. He told me in no uncertain terms that I needed to learn to pace myself…I could do many of the same things just not in the same way or at the same time. He created a protocol to manage the symptoms including pain, told me to quit travelling 180 days a year and come back same time next year.
As this new reality began to sink in, I went into a deep depression which was novel for me….not something I’m used to feeling. This downturn in my health caught me completely off guard. (I NOW know that being only slightly symptomatic and then having more symptoms pop up suddenly in your 30’s or 40’s is pretty common.) I was pretty ill but was hoping I could find my way back to a better quality of life. On some level, I knew that things were never going to be the way they were.
I started the grieving process for the life I’d already lived. It was as real and profound as any death. I grieved for the career I’d loved and lost. I grieved for the education I’d obtained and now could not use (3 Master’s degrees later!) I lost nearly every friend I’d ever had. And I lost myself. I didn’t recognize this person in the mirror who frankly looked like death on a cracker! What I now know, standing at this point in my journey is that you MUST allow yourself time to grieve the losses of the life you had and learn to live a new life. You must learn to let go and hold on all at the same time. And finally, it’s ok for grief to visit, just don’t let it take up permanent residence!
When you are diagnosed with any chronic condition, I think you have 2 options…
2. learn to fight
I’ll be honest…I floated for a long time…almost paralyzed by this new reality. I couldn’t see how I could loose all the things in my life that I thought mattered most (family, friends, career, mobility) and still have a life worth living. But after some time, and some better living through chemistry, I realized that there was beauty and joy in the world and that I could be a part of it (as long as I could sit!).
Here’s what I did, in no particular order:
1. Researched everything I could get my hands on about hEDS…knowledge is power
2. Researched medications…pharmacists are tremendous resources for info
3. Researched alternative or complimentary therapies
4. Began therapeutic massage, acupuncture, pilates, and physical therapy
5. Changed my hair, clothes, and work schedule to better accommodate my new symptoms
6. Altered my diet
7. Learned to meditate
8. Relied on family and faith…I drew tremendous strength from being ‘re-grounded’ in those relationships
Once the depression started to lift, I began to see the world through a completely different lens. Gratitude filled my spirit because I knew all too well, that things could be worse…a lot worse. It sounds cliché but it was as if the colors in the world where just a little bit brighter and I heard the sounds of the river flowing with greater clarity than Bose could ever dream about! Chronic illness has a way of instantly rearranging your priorities…things that were once super important are now at the bottom of the list.
One of the ways I cope is via humor. Generally speaking, I am a very positive, emotionally even-keeled, person but am known to appreciate irony and a good joke. If ever there was a condition that stood out for it’s comedic opportunities, it’s hEDS!
Think about it…the building material that makes of 80% of the soft tissues in your body is faulty and they can’t fix it or replace it and it’s only going to get worse as you age!! I can’t make this stuff up!! My instagram feed became an outlet for this humor and the realistic hEDS anecdotes that honestly fill my everyday life.
People often say to me questioningly, “So…you have this progressive chronic condition that caused problems in every body system and you live in constant pain…how can you be so positive?” The brutal truth answer: “What’s the alternative? Be miserable?” Not for this girl.
I returned to Dr. Tinkle one year later with local goodies from the town confectioner as a peace offering from my rather curt behavior a year before. At the end of our appointment as he walked me down the hall, he remarked with surprise, “You are a completely different person!” I thought for a moment and replied, “No, I’m not…I’m the same girl I used to be…it’s just that now I’m listened to and believed and am getting compassionate and quality medical care.”