Moving into the light

May is Ehlers-Danlos Syndrome awareness month. I wrote this in hopes of giving a better understanding of how *I* have experienced EDS throughout my life; keeping in mind that EDS is a spectrum meaning some people barely have any symptoms and can live normally and some have more severe symptoms.

This is not a full nor completely accurate medical history because my memory just isn’t that great. Please keep in mind while reading that these experiences I had are not inherently symptoms of a having a medical condition; these are just things I realized after my EDS diagnosis that were signs of it for *me* during my life. This should not be taken as medical advice.

I was 2 years old and, despite having learned to walk awhile ago, I still had trouble walking. My feet were flat and, instead of walking like most people do placing their heal down first then their toes, I would walk either touching my toes down first or just putting my foot down flat. Walking was difficult and fatiguing, especially with my tendency to walk into walls. Being covered in bruises was the norm for me.

I was 4 years old and we spent many weekends at my grandparents’s house several hours away. I loved spending time at my grandparents’s house; I would get to see all my family living in the area and we would spend warm days at the beach but I was always nervous when I first greet my pépère in the morning. He would always hold our hands and play with our fingers, pulling on them gently. I didn’t know why but it always hurt when he pulled my fingers. They felt as though they were being pulled off my hand. Every time we’d travel to see my family, we also ended up eating out frequently which my stomach did not appreciate. It was always a given that I would end up needing to stop along the highway to use the bathroom.

I was 6 years old and my head would hurt all the time. None of my other friend got headaches. I spent my summer at daycare and, during nap time, I would bury my head under a bean bag chair. The cold of the hardwood floor underneath, the pressure of the beanbag chair on my sore eyes and head, and the darkness of my hiding spot helped me feel better. I would dread when nap was over and we’d have to go back outside. I would spend most of that outdoors time sitting under play structures, happy to find any reprieve from the bright sun. My paediatrician put me on a special diet that was supposed to help my headaches. Whether it did or not, I don’t recall, but I do remember how upset I would be when we’d go for a walk with our daycare group to Tim Hortons and I couldn’t have a chocolate TimBit. I felt left out.

I was 7 years old and my head still hurt. Other body parts would hurt too. I was very clumsy and found it hard keeping up with the other kids on the playground. I would dread it when all my friends wanted to play red-rover where there are two teams and each teams links arms and the other team sends a member over to try and break through our arms. It didn’t seem to bother the other kids, they all loved to play it, however I found it very unpleasant. My body would hurt after having other kids ram into my arm. Nobody wanted me to be on their team anyways because I couldn’t run very fast anyways; I always found my legs felt so heavy. I didn’t understand how my friends did things so easily like squatting instead of sitting when the grass was wet or jumping rope for ages. Even the monkey bars were too hard for me. Drawing with chalk became my preferred recess activity.

I was 8 years old and wanted to start martial arts. Years ago, my parents had gotten me a karate follow-along videotape and I enjoyed it, especially since I had tried a lot of sports and just couldn’t get the hang of them. At least with the karate videotape, I felt like I was good at it because I was flexible enough to do even the more advanced stretches. My parents eventually signed me up for TaeKwonDo classes which I loved. My body didn’t love it though. I twisted my ankles a ton and frequently got soft tissue injuries. On nights where I wasn’t at TaeKwonDo, I started seeing a naturopathic doctor that my mom saw in hopes of helping my headaches. It unfortunately wasn’t a success.

I was 10 years old and I had to stop TaeKwonDo for over half a year because of back pain. Rub A535 became my best friend. I would get my parents to massage the cream on my back a couple times a day to help soothe the pain. It didn’t disappear but it eventually became less of a hinderance, letting me restart the sport I loved. At this point, my ankles and back were the most uncooperative. At least once every few months I’d end up with a sprained ankle but I just taped it up and kept going. I started noticing that things that should be easy weren’t. I couldn’t poor a water jug without two hands because my joints were two weak. I started dropping things a lot because of my hypermobile fingers and weak grip. Even on the playground where my friends crossed the monkey bars with ease, I could never do any of that. I chalked it all up to clumsiness but I didn’t notice other clumsy people having as much difficulty as I did.

I was 12 years old and starting at a new school. The school was two stories with the middle school and high school classes on the second floor. I dreaded walking up that big set of stairs everyday. Others would run up them with ease while my joints would hurt and I would rely on the railing to help pull me up. This year we also had gym class which I despised. Because of my clumsy nature and lack of proprioception (awareness of where your body is in space), I wasn’t very good at sports. We were no longer just expected to participate to get a good grade but we were also expected to be able to demonstrate skills of certain sports among other fitness testing. I didn’t get very good grades in that class except in the flexibility test where I had the highest score of the class.

I was 13 years old and working towards getting my black belt. I started taking higher level classes and going up to 5 times a week leading up to the testing. The road to the black belt wasn’t an easy one. Endless injuries became the norm for me and I struggled with kicks involving spinning or facing away from the target. Spinning just made me dizzy no matter how hard I tried to spot and kicks where you can’t see the target threw me off because I couldn’t sense where my body was in space to accurately control it. I may have been frequently side-lined but I worked by tail off trying to learn techniques I had once thought would be impossible. Despite certain of my kicks not being perfect at the time of my black belt testing, I had a sparring partner with whom I worked really well, and chose my board breaks using my best kicks and to show off my flexibility. My nerves were off the charts testing with a sprained ankle but I felt a wave of relief when I heard those two important words: “you passed” and was presented with my black belt. All my hard work had been worth it.

I was 14 and working my first part time job. I was an assistant to a wedding and portrait photographer; my job mainly consisting of carrying around the reflector and camera bag, among other things. I started noticing that every time I lifted my left arm, my shoulder would feel really weird, what I know now were subluxations with the occasional mild dislocation. I’d just pop it back in and keep going. My boss Miranda had even noticed a couple times. Navigating the outdoor studio in the woods was difficult for a clumsy person like myself but Miranda was always there to lend a helping hand. I really enjoyed by job; photography was a big passion of mine and I learned so much from working with Miranda. I started noticing that year too that if I stood up for a bit, I’d get dizzy, especially in the shower. When I would get out of the shower, my feet up my legs would always be purple and splotchy. I asked my mom if it was normal and she said it happens to her. Little did we know she has mild EDS so she shares some of my symptoms.

I was 16 years old, a newly appointed 2nd degree black belt, and I injured my hip at taekwondo during a warmup. I was doing a high kick and heard a pop and felt movement and pain in my hip. I finished class anyways. I thought it’d get better over time but it ended by taekwondo career. I went to physiotherapy religiously a few times a week for a couple years and we never seemed to make any progress. I spent a lot of time sitting out of gym class. That was okay with me because when I did participate, I had not only pain, but gym class was after lunch and I was having worsening bowel problems, especially after eating. It was a tough year because my chronic headaches came back with vengeance too. My physiotherapist noticed I had TMJ dysfunction so he gave me exercise to help that too. I ended up missing a lot of school in grade 11 and 12 because of these headaches that I just couldn’t shake.

I was 18 and in my first year of university at Memorial in Newfoundland. I was having the time of my life. I lived in residence and had so much fun participating in different residence life activities and volunteering. My classes were interesting and I appreciated the challenge they gave me. A few months into my first year, I got sick and never got better. My stomach was a mess. I couldn’t eat without being sick and had lots of bowel problems. I was also having problems with fatigue where I was sleeping all the time and I felt like I was dragging myself every time I had to go someplace. My legs and stomach hurt a lot. I was nervous showering on my own because I started feeling dizzy more and passing out, especially in the shower. Being upright wasn’t my friend. I stayed at school though because I already had appointments set up with some specialists. When I got home at the end of the year, I was sick as a dog and spent over 8 weeks in the hospital where I was diagnosed with gastroparesis.

I was 19 years old and after a ton of research and meeting a great friend who wanted to help me solve my medical mystery, I got a referral to a geneticist and made a the long trip to the IWK Hospital in Halifax to see the Maritimes Medical Genetics Clinic. There I was diagnosed with Ehlers-Danlos Syndrome, a genetic connective tissue disorder, along with POTS and MCAS. This combination of symptoms explained so much about my life and my body. I now use a wheelchair to get around because of dislocations in the legs. I also use a feeding tube and central line to keep my body nourished. I am raising a dog who will someday hopefully be my service dog. I am taking online classes towards my bachelor degree. I no longer have as many bad days as I did now that we are better managing my symptoms which but I do still have rough days. Having a diagnosis was like moving into the light. I was in the darkness for so many years, not understanding my body and why it did what it did. Getting my diagnosis has helped me accept my disability and respect how my body works. Without people spreading EDS awareness, I may never have gotten to this point. That’s why I share my story.

4 thoughts on “Moving into the light

  1. Pam says:

    What a biography of this road you have travelled . I think you have a fantastic memory and by sharing so much information it gives others insight and tools to work with . Keep spreading the word your road has changed but your amazing .💕💕


  2. Angela Cormier says:

    That is an amazing amount of information to share, Kathleen and we are grateful for you sharing it with us. Always in my thoughts….


  3. fibrofly73 says:

    Hello Kathleen, great read and have featured it in this morning’s edition of #chronicillnessVOICE to help raise awareness 🙂

    Wishing you wellness
    Carole Sian aka fibrofly73


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