When the pieces finally fit: Hypermobile-EDS

 In Chronic Illness, Disability, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Independence, Joint Hypermobility Syndrome, Thought Management, Understanding

Sometimes I look back over my life, and I am thankful that I was born in the modern era. Ehlers-Danlos Syndrome runs in families. Considering all the trouble we have in 2019, to get the correct diagnosis, it is a miracle that our families didn’t die out a long time ago!!

My story begins in 1982 in South Africa. I was born in the middle of winter, and although my mother was 39 at the time and had a difficult pregnancy, everything was normal according to the doctors: Anél van Schalkwyk, a healthy, 3.8kg baby girl.

Then the trouble started: at the age of 6 months I couldn’t hold my head up; at twelve months, I could barely sit without support. My parents were frantic. After a year, they found a paediatrician who knew a little bit; a university professor that called all of his students to come and see this!

The words “double-jointed” enter their vocabulary.

At the age of 4 years, I start to walk independently.

At the age of 6, I start first grade. Tallest in my class, but with a weight of 15 kilograms. My little backpack dislocated my shoulder, elbow and wrist when I carried it in my hand, which would continue until I finished school.

In standard 7, fourteen years old, I get a teacher that tells me in front of the entire class that I am faking and she demanded that I stop. Her husband was a doctor, and I told her to go and ask him if what was happening to me was indeed possible, since she wouldn’t believe me in any case. She never talked about it again.

While taking notes in class, my fingers would sublux because I gripped the pen too tightly. One of the other girls kept telling me that it was impossible. My answer: “It must be possible because it is happening to me!”

Luckily my parents never pressured me to do any sport. I refused to enter a swimming pool, and the first time I had a dislocation, I refused to continue with any exercise. Sport isn’t supposed to hurt unless you are injured.

At the age of 26, my migraines start — 24/7 for four years. I start looking for answers, and I start finding them.

Ehlers-Danlos Syndrome. Probably the hypermobility type. It is all that fits. It feels as if I am building a puzzle without being able to see the picture.

I develop cluster headaches, and tension headaches together with the migraines, which makes life even harder. But every now and then, just as you want to give up, you get an answer to a question that you didn’t know existed. We are learning so much more each year now.

Today I know that both burning through medication, and daily pain will always be part of my life.

What I also know is that I have met my best friends because of my Ehlers-Danlos. I have learnt lessons that I wouldn’t have learnt otherwise; empathy, patience, listening to others, how to give instead of receive, to pay my blessings forward.

Despite wishing for more pain-free days, or more energy, I am thankful for where my journey has taken me and will continue to take me. I wouldn’t be the person I am today without it.

What is one thing about your life that you are grateful for? Share it with us in the comments!

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