Road to Diagnosis – Part 2

There comes a point in every child’s life (or so we hope) that they grow into an adult.  The wings of youth are spread wide to fly into adulthood, and we exit the nest – some of us more gracefully than others.  For me, the flight from the nest was done in a near panic because I lived in a nest full of vipers.

Mom's Wedding

The blushing bride.

Around the time I was graduating from High School, my entire home situation changed.  Instead of living with my Mom and my tyrannical step-father, I was now going to be living with my Mom and her new wife.  Yeah, that’s not a typo – at the age of 17 my Mom asked my permission to enter into a relationship with another woman.  It seems crazy that a grown-up would ask a teenage child’s permission for something like this, but my mother’s issues weren’t just confined to drugs and alcohol.  She also had a very unhealthy relationship with me.  It felt as if the role of parent had child had always been reversed with us.  When she set me aside for her new relationship, I really didn’t know how to deal with that.  I was pretty adrift and feeling alone at that time.

Maid of Honor

Me as Maid of Honor.

I didn’t want her to marry Lori, but I still stood up as her maid of honor because I didn’t know how to say NO to her.  None of the problems improved at all in this new relationship, and the older I got the more I was drawn into the drugs and dysfunction.  Her wife also had drug and alcohol problems of her own, which just made things so much worse around the house.  I don’t want to go too far into that situation, because that’s not what this blog is about.  What is relevant is that I was still taking care of myself in all the ways that counted, without much help from any adults, and now on the verge of adulthood.  With so much going on around me, I was hardly focused on the aches and pains.  That’s not to say the pain wasn’t a constant, just that I wasn’t constantly able to focus on it.

Let me be Blunt

I found marijuana early. It works.

As I mentioned in the previous post, I had been learning to suppress my complaints about the pain I was experiencing.  I wish I understood how this happened, how I got ‘tough’, if that’s even what it is.  If I knew how it happened I’d gladly share my secrets with you.  I think that I learned to focus on everything around me that wasn’t me, everyone around me who wasn’t me, and only talked about things that really weren’t important to me.  All of the skills I learned growing up in a dysfunctional household also served me well in hiding what was really going on with  me and how much pain I was in.  I had mostly given up on any sort of real treatment or help, any cure or answer, and would just happily take whatever pill I could obtain from a doctor or my mother that dulled the pain – and the pain was not just physical, of course.

I was still clumsy as ever and really accident prone.  I remember jumping down from the back of the pickup truck once at their house, spraining my ankle.  I know that it went completely sideways – and in retrospect I realize that being so flexible saved me from a greater injury that day.  This was celebrated as another occasion to see a doctor to get some ‘good meds’, and of course these were shared with everyone in the house.  I was learning to self-medicate from a master, my mother, who had been at it all her life.


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.


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.