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Suffering the Silence: My Portrait of Chronic Illness

Suffering the Silence: My Portrait of Chronic Illness

I came across the online campaign Suffering the Silence through this PBS article and immediately knew that I wanted to participate. It’s an awesome movement that encourages people with chronic illness to share their stories. I’d highly recommend browsing the Instagram and Twitter hashtag.

Scrolling through the pictures, I have found it so encouraging to see other young people discussing the hardest parts of chronic illness. These diseases can be incredibly isolating. And when I see people with multiple diseases, and read the things they’re saying, my spirit lifts a little. I’m reminded that I’m not alone.

I haven’t talked much on this blog about my recent diagnosis with Type 1 Diabetes. It’s been interesting. It sucks, of course.

But I have been thinking about the strange way my chronic illnesses have come. My little sister, Laura, was diagnosed with T1 Diabetes when she was thirteen. The process was crazy, from the nurse in the ER who informed my mom Laura had anorexia and told her to go somewhere else (when Laura was literally starving to death because her blood sugar was so high) to eye surgeries so unusual that they took pictures to put in medical textbooks.

I was about 14/15 during all this. My own health troubles started when I was 17, and I took strength from Laura’s experience. Her diabetes taught me how to live with RA.

Strangely, now my RA is teaching me how to live with my diabetes. Shots don’t bother me because I’ve been on HUMIRA before (which is basically burning poison in a syringe). Insulin is easy peasy comparatively!

There are lots of ups and downs. There are good days and there are hard days. There is a lot of counseling. (Everyone who has a chronic illness needs a counselor. Period.)

I don’t know if I’m saintly enough to say I’m grateful for all this. But my chronic illness makes life more vivid. It gives me boundaries. It is a painful, terrible, beautiful blessing.

My original post from Instagram:

Suffering the Silence

People often say I am brave. But brave is just another label, a side effect or symptom. When I am going in for my third hand surgery, or when I give myself a shot, or when I too fatigued to get out of bed, I am not being brave. I am existing. I am doing what I can to live the life I have. If bravery is simple survival, I would rather be something harder. I would rather be joyful. Existing happens, easy or not. But the pursuit of joy? That’s the thing that often feels impossible.

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3 Comments

  1. “I am not being brave. I am existing. I am doing what I can to live the life I have. If bravery is simple survival, I would rather be something harder. I would rather be joyful.”
    Alyssa, this is beautiful. I’m working on a post similar to this about me and my Lyme disease. The above quote pretty much sums up everything I’ve been struggling with. People look at me and see bravery. And maybe I am. But not for any other reason than because pushing forward is the only viable option.
    Thanks for the post. I’ve never heard of this campaign, but it looks interesting. Keep doing what you’re doing. I’m praying for your RA, diabetes, and joy.

    1. Stella Young’s Ted Talk is a great watch/listen. She doesn’t talk about the bravery thing, but she does talk about the rhetoric around disability. I think people mean well. But I’ve never spoken to someone with disability who said they felt “brave” about their lives. Some day I’m going to write an essay about how brave is a label that limits as much as it compliments.

  2. An insightful and beautiful post, Alyssa. Thank you.

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