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How I Hosted an Invisible Disability Awareness Event

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In college, I co-founded a support group that provides encouragement, empowerment, and advocacy to students with chronic pain or illness that interrupts daily life. STRONG is a club that functions as a support group, providing a tremendous source of strength for participating students with physical and mental illnesses and disabilities.

Every person in our club had some type of invisible disability. Named after the phrase we all so often hear, we decided to host an event called “but you don’t look sick.” We determined that we wanted the event to be a five-day display. How would we visibly show others our very invisible disabilities?

Invisible disabilities awareness display with photos

One of the most impactful things we did was post photos that we took of ourselves that included makeup, trying to depict what the pain would look like if you could see it. We also put up photos that displayed STRONG’s co-founder with her ostomy and photos that showed how anxiety affects the body physically — in the stomach, chest and head, among others. We also decided to put up quotes, both inspirational and ones that demonstrated the realities of living with illness. We had members write their stories and made collections of things that were helpful to say and things that were unhelpful.

Arm makeup illustrating bone and joint pain.

We collected our prescription bottles for months and put them all over the display. We posted our answers to questions like, “How does your illness affect you every day? How does your life look different from your peers?” and “how do you want to be supported by your peers?” Members only shared their names with their responses when they wanted to and felt comfortable disclosing.

The display had a section where those who looked at the display could respond to what they had seen anonymously. Some said, “It’s good to know that I’m not the only one struggling with an unseen illness. You guys give me hope!” Others said, “I was diagnosed with fibromyalgia last week and reading these stories brought me a sense of hope. I’ve learned that I’m not alone.”

Board for visitors to pin answers to the question "What did you learn?"

While the display helped people to feel seen, it also helped to educate those without the knowledge of what an invisible condition looks like day-to-day. One said, “I learned that my lack of knowledge and lack of sensitivity can cause further, unexpected pain. I need to be compassionate and know my words matter.” Another, “Reading your stories and catching a small but so real glimpse into your lives is so needed. Thank you to each of you for taking the time to be vulnerable and explain what life is like for you and how I can be a support system.”

So far, our “But you don’t look sick” displays have been held annually, for two years so far. Sharing our stories gave us power. It gave us the space to declare our truths and to let others know how we felt and how we desired to be treated in a society that often discredits our pain and makes us feel less than because of our differences. Your story matters; your story is important. If you have the time and support, share it with others in whatever way you can. The world needs your story.

Originally published: February 25, 2019
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