THIS story made me cry …..
I Was Just A Typical Teen Who Loved To Dance Until I Discovered The Rare Disorder Responsible For My Crazy Flexibility Was Also Destroying My Body – published today by Seventeen Magazine
This post by Seventeen Magazine via their Facebook page, tells that all-to-familiar story of a typical teenage girl’s journey to a diagnosis of Ehlers-Danlos Syndrome.
“It makes me dizzy, nauseated and weak, and blurs my vision. Worst of all, it’s the reason I get so tired. I have to take two-hour naps every single day after school, just to get through my homework. I love reading, but when I’m tired, my brain shuts off and I can barely understand the words on the page. I remember things best when I write them down, but by the end of the school day, my handwriting is so thin and shaky, it’s barely legible.”
EmJ, who the article is about, shared an eerily similar story to my own. After working with many EDS patients and reading thousands of emails and stories, there are similarities, but hardly ever are any two so similar. The reason is because each person with EDS presents so differently due to the fact that connective tissue is literally all over our bodies. We each have additional genetic, environmental and lifestyle components that can affect the expression of our symptoms.
For me … this story was different. It stopped me in my tracks, the virtual kind. I went from reading another family story about EDS and its comobidities, to crying without warning. It’s amazing how emotions catch you off-guard like that, especially when you least expect them to.
EmJ’s story was more than familiar, it was almost identical, down to the words she used. Even still, there are differences in her story to my own — I was never diagnosed with Celiac and I did not dance as competitively. Yet, her words triggered mental pictures from my own story; she spoke about sleeping through a family vacation, on a boat, under a pile of towels and even getting weird allergic reactions.
Word for word….THIS is what my life was like as a teen with EDS, but I never knew what “it” was or “why” I was like this and my friends and siblings were not. As a kid and into my teenage years, I had also had been diagnosed with horrid GI and pelvic issues, suffered from debilitating headaches, was told that I had arthritis from my neck down to my knees by age 18yo, had a ganglion cyst on my left wrist for years and I had always been the kid with the coke-bottle glasses because my eyesight was so poor from my lazy left eye.
Much like EmJ, I loved dance and would dance for hours our living room to “Putting on the Ritz.” My taste in music obviously changed as I got older. I even used to dance with my Dad, until I got too big for him to swing me around. In fact, when I got married, my father and I danced to one of our typical fast dances, because that slow stuff just didn’t apply; I also danced to a slow song with my mom.
The really crazy part in this? My Gram, my mom’s mom, the one who we can trace the EDS link to for sure, passed away on my wedding day and my mom knew it. My whole family knew as well, including my new husband. Gram passed away at the hotel near our wedding and just a few moments before I walked down the aisle. On Christmas day, two days before I got married, Gram told me that she “was ready to go now” and that she knew I “would be ok and that Brian would take care of me.” In my gut, I knew what Gram was saying, but I did not want to believe her. I also knew that she was probably right. To face was she was trying to tell me was far to painful for any soon-to-be bride and unfathomable for us. Gram moved into with us after my parents divorced to help care for me when my mom worked. However, she moved to Florida when I was in high-school, because she refused to stop smoking and take care of herself. My mom couldn’t handle the burden solo anymore — the stress was too much. A few years later when I was in college, my mom ending-up losing her job with Crown Books and moved in with my sister. About a year later, she was diagnosed with breast cancer and then Cardiac Primary Amyloidosis after that. In the picture above, my mom also knew that her mother had passed away, yet she remained so incredible stoic and happy for me. She had also completed treatment for a stem cell transplant at the Mayo Clinic for amyloidosis. A year and half after this picture, my mom passed away. Ten days prior to her passing, we found out that I was pregnant for the first time.
I guess that’s where EmJ story is also different from mine — my parents did not understand how to help me and all the issues that I seemed to keep having, if they even believed me. I think the stress of divorce, my mom’s full-time demanding job and the fact that she had to deal with my Gram’s health, was too much for her. She usually felt pretty crappy herself and my dad, I think he just was overwhelmed and didn’t know what to believe. My mom and I made amends for issues ignored and the hurt it caused while I was in college. We were able to enjoy a few good years of mother-daughter bonding by the time she passed — my wedding was the pinnacle.
Movement helped ease pain and helped give me energy. At 11yo, I started working out to Buns of Steel videos in my family room. And after my two-hour naps each day after high school, I would drive to the local aerobics studio to attend classes. During my senior year, my knee dislocated just from being bumped by a friend. I was told to start strength training, but not to do the leg extension machine … I will never forget that, because now I understand why.
In college, I worked out before going out. My friends thought it was because I was just gym fanatic, but it was because exercise also gave me enough energy to go out for a few hours. I could hang for a while as long as I got a workout in and if we went somewhere with dancing, I was golden…especially if there were boxes to dance on. Otherwise, I was the girl who would much rather stay home and sleep then go out. Just the thought of getting ready to go out and staying out was exhausting to me.
Since writing has never been my strong suit and I quickly learned that I could not read my own handwriting, I had to adapt by sitting in the front of the class and finding something to do while listening to my professors. I cannot count the amount of times I was ridiculed for “balancing my checkbook” during class and thank god for my friend Fran’s notes, but I honestly couldn’t stay awake otherwise. Being so tired also meant I skipped class a lot. Sitting for too long would make me so lethargic that I wouldn’t be able to stay awake, not to mention the fact that it caused terrible leg pain. As a result, I never stepped foot in the library to study….not once. Ever.
The same issues followed me to my first career job after college in pharmaceutical sales, because I would need to find some way to sit for long hours during a meeting. I found that by going through my receipts for expense reports, I was remain engaged and awake during district meetings – it never went over well with my boss. When my mom was sick and my boss would ride with me, he would comment that I was not engaged during our time in the car together, driving from office to another and that I just stared when I was driving. He would suggest that I was thinking about my mom and not my next call. Umm… Nope! I’m just trying to focus on driving because I’m so tired that my eyelids feel like they have 100lbs weights on them and my legs and hips hurt something fierce from sitting and driving all day. And who cares if I am thinking about my mom??!!! She’s fighting to survive! Of course, I am thinking about her! (This was around the same time as my wedding, which I mention above)
At the end of most of my work days, I would sit in a safe parking lot, lock my car and shut my eyes for an hour and a half, because I knew that there was no way I could make it home without falling asleep.
As an adult who has now been diagnosed for ten years, I have added to my laundry list of comorbid conditions that go along with EDS, both new diagnosis and ones that I’ve learned just fall under the big umbrella of living with a connective tissue disorder. However, I do feel a lot less arthritis pain at 36yo, then I did at 26yo when I was diagnosed (unless flared). I chalk that up to a positive outlook, remaining active safely and good nutrition. When I go through a flare, I’m humbled by reminders of how many joints are afflicted with arthritis and bursitis.
I honestly feel that it was probably a good thing I was not diagnosed as a teen, because I’ve had to learn different ways to adapt and keep going on my own. Having to do so, has shaped who I am today and also my overall view on how I CAN live with EDS. In many ways, so much of what is good in my life would not have happened if I was not diagnosed with EDS. I certainly would not have started this website and be writing this blog post, both of which are a direct results from people I’ve been through charity work and speaking in the EDS community, as well as starting my Strength/Flexibility/Health/EDS Instagram account a few years ago.
While I love this story, it saddens me when I hear teenage girls (and boys) talk about not knowing what the future holds for them or if they will even be able to have a family of their own. Truth is, none of us know, EDS or not. However, many of us have gone on to have families and jobs. Nothing is impossible, you just have to adapt and keep trying until you find a way. Oh and a husband/spouse/partner/significant other who is willing to become a good massage therapist and in-laws (or close friends) who allow you to crash on their couch after eating a normal home-cooked meal, help also.
To read EmJ’s full story that made me cry via Seventeen Magazine, go here.