Road to Diagnosis – Part 1

My name is Angel and I have a story to tell.  I’m 37 years old and was diagnosed with Ehlers Danlos Syndrome on April 8th, 2013.  It’s been a long road to diagnosis, and I hope that by sharing my story I can shorten the trip for someone else who needs to arrive at this destination.

Baby Angel

I was their first, and they were so excited!

On November 21st, 1975 I was welcomed into this world by my parents, Rita and David.  My Mom was in labor with me for 72 inconceivable hours and I had to be pulled out with forceps – which gained me the nickname ‘conehead’ as I’m told I arrived looking a little pointy on top.  Despite the long and painful process of my birth, by all accounts I was a happy and smiling baby.  I was very active (and very flexible) and generally good tempered.  Since no one in my family was ever diagnosed before me, no one had any reason to suspect that any of my flexible behaviors could be a sign of a problem.  My Dad was always ‘double jointed’ and no one thought it was a big deal.  I was thriving, and everything seemed just fine.  I have some great memories of playing with my best friend Natalie who lived down the street in New Vienna, Ohio.

Daffodils

I loved the daffodils in our yard.

As a small child I would often put both of my legs behind my head and rock to entertain myself.  Surely not a common thing for a kid to do, but it didn’t seem odd to my father who had been doing ‘party tricks’ of his own for all his life.  Honestly, the main concern at the time was just that I kept my clothes on when I did it in front of people!  I was clumsy too, and would literally kick myself in the butt when I ran while playing T-ball at school.  Being uncoordinated is hardly a warning sign either, so it was all chalked up to being a little clumsy when I was no good at gymnastics or ballet or anything else of the sort.  I’ve since heard that many EDSers are often blessed/cursed with these abilities in childhood, but I wasn’t one of them.

Kid Lifting

Me holding a baby goat.

Throughout the first 12 years of my life everything really did seem pretty fine physically, and the pains of EDS had not yet found me.  I didn’t feel that I was really different from any of the other kids.  I was able to do things just like all the other children, as well as some ‘bendy things’ they couldn’t do.  I was active in girl scouts, little league soccer, jumped rope, roller skated, ran, and played like nobody’s business!  My family often remarks about the vivid imagination and jovial attitude I displayed as a child.  I had a thirst for learning and loved to talk.  I was a pretty strong kid, strong enough to lift a kid (a baby goat) and there weren’t any problems apparent to anyone.  By all accounts I seemed happy and normal.

My First Beer

What passes for amusement in an alcoholic household.

When I was 8 years old my parents divorced.  I bounced back and forth between Mom and Dad for a few years living in Kentucky.  Around age 10, I ended up moving to live in Orlando, Florida with my Mother and step-father.  It definitely wasn’t an ideal situation, as they both had alcohol/drug problems and general problems just dealing with life.  My step-father was a real tyrant and I guess my Mom enjoyed the maltreatment.  At any rate, it was hardly a condition for a healthy child to thrive in, and definitely not a great environment for a child with EDS.  By age 10 I was more than partially responsible for taking care of a household of adults and my little brother.  But, the EDS pain hadn’t set in yet and I was getting by for the most part physically (emotionally is a story for another post).

Teenage Years

Me around age 13 torturing my little dog in a dress.

My EDS story really starts with the aches and pains I experienced as a teenager.  Puberty hit around age 13 and, like many other people with Ehlers Danlos Syndrome, I went to the doctor for shoulder/neck/back pain – because that’s often when the issues with EDS begin to manifest.  Unfortunately, all too often doctors misinterpret this pain we report to be growing pains or just not that serious.  My breasts were developing rapidly with crazy amounts of stretch marks (also a sign of EDS).  I recall that there was a mention of degenerative disc disease then, which seems like it should have raised some sort of red flag.  Little did I know, when that doctor sent me back home telling me to lose weight and exercise, he would be the first of SO MANY doctors who just didn’t take my complaints seriously.  Surely no one that young could really be sick, right?

Junior Prom

Dressed for my prom at age 16.

Some of my most vivid memories of my teenage years are about dealing with pain in my back, neck and sacroiliac joint (even though I didn’t know what a sacroiliac joint was at the time).  My menstrual cycle was incredibly painful and would often keep me out of school for 1-2 days per month.  My family wasn’t very understanding about this stuff and still expected me to do my chores (which in that household was just about everything from dishes to laundry, cooking and cleaning).  At age 16 I got my first job at Taco Bell which caused even more pain.  Complaining to anyone didn’t do much good, so I learned to keep my aches and pains to myself pretty quickly.  I tried to hide behind a smile, but there wasn’t a whole lot of smiling going on inside.

Hiding behind a smile with friends near graduation day.

Hiding behind a smile with friends near graduation day.

I found more and more reasons to avoid any and all physical activity,  including getting notes to get out of physical education at school.  I didn’t  know that exercise intolerance was common with EDS.  I was embarrassed by my lack of fitness, and with obese parents at home my eating habits were not sustainable without exercise.  The less I moved, the more weight I gained.  Exercise often caused me pain, but I still made a few attempts at various times during my high school career to ‘diet and exercise’ so that I could be ‘normal’. I continued to visit doctors about my pain, but they all just told me to lose weight so that my breasts would be smaller – that the weight was causing the pain.  I know now that isn’t the case, but I sure did spend a lot of time beating myself up back then.  I’ve always been a little too quick to accept the answer that something is my fault.  That’s starting to change now.

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