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Choosing Joy in My Life With Chronic Illnesses

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My son and I both have celiac disease. He has always loved pasta and decided to visit a little Italian place that was very aware of celiac disease for his birthday. They apparently are famous for their cannoli and I begged my mom and brother to each order one. The cannoli wasn’t gluten-free, but I wanted to live vicariously through their experience. For the first time in my life, instead of feeling frustrated and disappointed that I couldn’t have the delicious dessert, I felt a lot of joy as I watched them eat theirs. I grilled them with questions on how it tasted. It was like watching the Food Network as they gave me their descriptions. I left the restaurant almost feeling like I’d had a cannoli as well.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

In addition to celiac disease I have several severe food intolerances. It seems like every few months I lose a new food — the most recent being pistachio. Beyond food issues I am also in the process of being diagnosed with Ehlers Danlos Syndrome (EDS). We aren’t sure yet what type I have, but I have become more and more limited in my physical capabilities. I once was able to run several 5Ks in a week and was training for a half marathon. Now I can’t run at all without severe pain. Some days I can barely pick up the toys and do the dishes.

As I have become more and more limited in what I’m able to eat and more and more limited in what I’m able to physically do, I’ve realized I have a choice. I can constantly feel sorry for myself (and there has been a lot of feeling sorry for myself) or I can throw myself 100 percent into life and enjoy what I am able to do and experience with a renewed sense of gratitude and appreciation. I can experience joy as I think in gratitude of my life, my family, my children, and the incredible beauty of the world that I see around me and experience every single day.

As I watch those around me eat things I’ve always wanted to eat but can’t and do things I’ve always wanted to do but can’t, I have a choice. I can choose to be bitter. I can choose to be frustrated, alienated and angry that my life isn’t what I thought it was going to be, or I can choose to feel joy that these wonderful people get to run, adventure, hike and eat delicious food. I can cheer my husband on as he trains for his half marathon. I can imagine what the cannoli tastes like from the description my brother gives me. I can experience joy as I see the world through the eyes of those close to me.

There are things in life that are fixed facts. I have celiac disease. Until they find a cure it isn’t going away. I have a connective tissue disorder. Until they find a cure it isn’t going away. I’ve learned there is a point in life where you stop beating against the brick wall of things you cannot change and look for a way to live your life with joy, gratitude and hope despite that brick wall.

Getty image by NoirChocolate.

Originally published: August 19, 2019
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