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When I Finally Learned the Names of My Chronic Illnesses

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Looking back, “it” had always been there, lurking in the background. But the first real memory I have of it was when I fainted while watching a movie at school. I would have been about 10. 

From that point on, particularly once puberty started, it really tried to dominate my life with migraines, fainting, dizziness, shakiness and brain fog. It made me tired doing the simplest of things. It made me feel “off” — a lot.

Doctors spent my teens testing me for all sorts of things — diabetes, glandular fever — anything to explain the symptoms that were stopping an otherwise healthy teen to get on with her life. But in the end, there were no answers. I just had to get on with it.

I got through university and landed a job working full time as a teacher. I loved my work, but it was always there. Every now and then, it would come out of the shadows and really knock me off my feet.

When the kids came along, it really kicked my butt. There were times when I didn’t get out of bed for weeks or lift a brush to make my hair look a little neater. If I tried to sit up, I would have pains across my chest like a vice. Walking to the kitchen to make a cup of tea would leave me breathless and shaky. There were times when my husband would find me collapsed on the floor unable to move or speak.

The doctors told me it was post-viral ME, but I knew that was just an alias. I wish I knew its real name.

When my babies grew, they were all bendy. One was super skillful but faced challenges with stamina and fatigue. It wasn’t going to get them. I started to read and then read some more.

Then in my mid-30’s, I finally learned its name. And it turned out that “it” was a combination of chronic illnesses. I learned about dysautonomia/autonomic dysfunction, Ehlers-Danlos syndromehypermobility and the role of connective tissue.

I now had the puzzle pieces. I could learn to play it at its own game.

That’s when the balance of power shifted. The more I learned about it, the more my life became illuminated. I finally understood why my body went into shock after going through labor with my second baby. I understood why I’ll pass out after eating a carb-heavy meal, why I can’t stand for any length of time and why I get goose bumps on a hot day.  

I also realized that in the nearly 30 years since I have been sharing my life with my chronic illnesses, I’ve been learning how to manage them to keep the symptoms at bay. Many parts of this management have naturally become part of what I do every day. Others, however, take a little more effort.

I’m fortunate to finally know the names of my chronic illnesses because at last I fully understand how to make our relationship work.

As for my babies, I know that when something is standing in the light, it’s much easier to face.  

Follow this journey on My Stripy Life.

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Lead photo source: Thinkstock Images

Originally published: June 23, 2016
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