I spent my life trying hard to be heard in numerous ways by many people in many milieus.
This is the story of how I finally was heard at 45. And oh boy, how!
I grew up as the smallest and youngest of two kids in an alcoholic household where I often spent time hiding in the basement from the fighting and “storms” that passed overhead.
I was picked on by neighborhood bullies on the way to and from my grade school, and shunned by my classmates during many after-school activities.
I was never “popular” or sought after like some who were bigger and stronger than I and not just because of my family life. I struggled to hold much less swing a softball bat, was easily knocked over in dodge ball, and often placed in the lower ranks of any “track and field” activities I tried.
I struggled to be “seen” and “heard” both at home and at school, and not for lack of effort.
But I was always very gymnastic and lithe, which gave me a small boost in the synchronized swimming my mom put me in at 9 for unknown reasons to this day (a hidden blessing years later thankfully).
I could do fun party tricks for the family at holidays, bending over backward from a standing position and “walking” my hands through my legs, much like the Ross Sisters in “Solid Potato Salad”.
I had skinny bendy fingers and hyperextended elbows, but no one ever said this was notable.
I also bruised easily, had a lot of stomach aches and digestive trouble, got cold very easily and had strange “growing pains” and weird headaches we never could figure out.
I got sick quite easily, and was anaphylactic to bee stings and the iodine contrast dye used in an IVP to diagnose some of those growing pains (nothing was ever found).
My list of drug reactions and sensitivities steadily grew through high school and college. I still tried running cross country and even became a bike messenger at one point despite my lack of endurance and easy onset pain and fatigue (no one said I didn’t try)! But I started to have chronic lower back pain at 20 that was never explained nor eliminated along with weak knees that hurt too easily.
I struggled to work through college, vomiting for days after my appendectomy in sophomore year, and again after an outpatient surgery later. Still no one thought this was odd or notable. “Some people just do that” they said (really!!!). I now know better, but hold that thought.
I ended up being diagnosed with Chronic Fatigue Syndrome shortly after graduating in 1992 for lack of a better diagnosis. I wasn’t as sick as most in that group, so I didn’t feel I truly belonged there. I was one point shy of enough for a Fibromyalgia diagnosis, so again felt I didn’t fully belong. I ended up on disability for a bit after college because of this, but felt like I wasn’t done trying to work.
I slowly returned to work eventually discovering my knack for administration and tracking things. But I continued to injure easily with any repetitive motion or strain, coming down with ganglion cysts after mowing lawns, neuromas after walking to work regularly for just two weeks and tendinitis from data entry during various jobs along the way to becoming an Access database programmer.
Most doctors wrote off my chronic pain and fatigue to being “just depressed” all this time. I definitely did battle some very real organic depression through the years but knew deep down this wasn’t the whole picture.
I finally took out T3-5 in my thoracic spine twisting (not lifting) to collate inpatient medical records at a busy hospital where I worked in 2007. The physical therapy made me worse no matter what we tried. No one could understand why until I told my massage therapist one day in a rare session (sensing a theme I trust).
Thankfully she recognized my possible hypermobility then, and suggested I look into that. I’d never heard this term before, and a quick google netted me the British Hypermobility Syndrome Association (http://hypermobility.org/) where I found a post by Dr. Rodney Grahame that described me to a "T".
I asked my doctor if we could look into this, but he once again dismissed the notion leaving me invalidated once again. I carried on with my life as best I could, slowly reducing my activity level to avoid aggravating my now perpetually loose vertebrae. Fast forward to 2011 when I was having one of my best database consulting years, and I suddenly found myself steadily weakening from head to toe while programming at home. I ultimately split my right SI joint, and subluxed my right leg, fingers, ribs and toes.
I scrambled to get my medical insurance back while self-employed to see what was going on. I did on January 1, 2012 just in time to go from walking to wheelchair in 3 weeks later that month from a sudden onset “storm” or cascade of weakness and laxity from head to toe.
Needless to say, my doctor finally listened this time (I could barely move at this point!) and I was diagnosed by a medical geneticist with Hypermobile Type Ehlers-Danlos Syndrome on Valentine’s Day 2012, just in time to turn 45. Talk about your mid-life crisis, smile. Alas, my parents were both gone, so never got to know the family diagnosis (I now suspect both of them in 20/20 hindsight).
Ehlers-Danlos Syndrome is a collection of genetic collagen defects that cause you to have weak connective tissues of all types throughout your entire body.
It lends to hypermobility which most think of as just flexibility, but also subluxations (“double-jointed”- ness) and full dislocations, hernias, weakness, prolapses, strains, sprains, tears, easy bruising, aneurysms, varicose veins, myopia and much more.
It comes with several poorly recognized comorbidities including autism spectrum and MCAS.
Thanks to some support groups I later recognized all the signs of Mast Cell Activation Syndrome (MCAS) in myself. This explained all my vomiting, IBS, flushing, hives, anaphylaxis and food, chemical & drug sensitivities.
You could say we put the “syn” in Syndrome!
Finally, after a lifetime of invalidation and dismissal, I had an answer for ALL of my issues - it was my connective tissues and trippy mast cells.
Finally, I was heard. I now notice it quite commonly around me, though most are still “subclinical”.
I like to say EDS is not rare, just rarely diagnosed.
I’m pleased to share that with high dose vitamin C and other nutritional work, warm water therapy and cycling, I’m back out of the wheelchair again.
Learn more about all of the above at: http://ohtwist.com
Jan is an HEDS, MCAS and dysautonomia survivor and writer, working hard to keep walking while trying to increase awareness through her writing. You can learn more about all of the above at http://ohtwist.com
Labels: Ehlers-Danlos Syndrome, Guest Post, Stories