Chronic Illness - To Share Or Not To Share

3 years ago

I have had a tough go of pretending I don't suffer from a chronic illness (or two) these past few months. There was a day where I actually posted about having a seizure on facebook. My husband was not pleased. His mother called him about it to check on me. The horror!

As usual, I felt bad, sorry to inconvenience him with my health issues. Sorry to bring attention to the fact that we don't always have our sh*t together over here. In a moment of weakness I dropped the fakebooking for a bit and let myself be sad on social media. I was craving a virtual group hug and a couple pats on the back. It felt good. I felt loved. I felt understood. 

Going public with chronic illness is tricky. I really thought about it for a few minutes before I hit POST. I have always preferred not to dwell or gripe, in person or online... mainly because my general approach to illness is that if I don't talk about it, it might just go away. Unfortunately, in the case of my epilepsy, that approach has been less than successful. As I near the 20 year mark of my ignore, ignore, ignore strategy, I am beginning to rethink my game plan.

Chronic illness is isolating. Being a mom with a chronic illness is stressful. Being a working mom with a chronic illness sometimes seems downright insane. Opening myself up to that criticism, the skepticism from others is a little daunting. I know the questions before they are even asked... and they all involve my children. Some people dance around the question but others just come right out and ask, "Who's watching your kids while you are having a seizure?"

I try to assure them that we have systems in place. I have a decent aura that lets me make a phone call or send a text message for help.  I always say that my kids are awesome and calm and know what to do. Even as I say those words, I know they sound crazy. As I was recovering from my last seizure, my kids quietly worked on sticker mosaics and left their creations on my bed as get well cards.  

My kids understand my epilepsy in different ways. The little guy understands, in the moment, that mommy is sick but he doesn't really put much energy into sorting out what that means. The older kids are just starting to get that this is not normal and that makes me a little sad. In the life is unfair column, kids worrying about sick parents certainly ranks up there.

And so, while I am feeling good, I will go back to my standard social media topics - kids, veggies, and occasional diatribes against my state lawmakers. But I can't promise anyone that I won't be needing another virtual group hug in the near future. You've been warned. Please don't tell my husband. 

Erin B.

Cooking up local, delicious and gluten-free food at 

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