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To the Man With a Visible Disability Who Commented on My Invisible Disease

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Living with congenital heart disease, a nearly invisible chronic disease, I had to learn at a young age when I needed to explain to someone I had something they couldn’t see. It was always uncomfortable, but there were many physical limitations I needed to make people aware of that separated me from my peers. I never thought of the difficulties of living with something so invisible until I was given one of the biggest gifts of my life by the most compassionate of men.

While in college I was working at a car stereo shop and in came a man in a wheelchair. He needed help with a lot of everyday tasks. He drove his wheelchair several miles a day to his passion — his nonprofit to help others with disabilities. As he drove in that day he was smiling ear to ear, the same smile he would have every time he came in those doors. He was in need of some lighting for his wheelchair so he could navigate the roads home in the dark of the night. I worked with him for several months until his wheelchair flooded the road with light so he could safely pilot his way to his life’s work.

We connected over the course of those months. I thought of him often.

One day he came in and I was gone — I was 180 miles away getting news that my countdown for my next heart surgery was beginning. When I saw him next he asked about where I was, and of course I told him. He was compassionately inquisitive, and I shared  the highlights of my story in the time we had.

What he said next forever changed my life.

“Wow, Joe, that must be really hard to walk around carrying that with you and nobody knows.”

I was speechless and holding back my tears. I cannot even remember my response; it must have been some jumbled mess.

After he left, what he said began to sink in, although it took weeks to fully comprehend. Even though I have had an invisible disease my whole life, I had never thought of the challenges that face someone with the same invisibility. I have never hidden my disease; I would gladly tell anyone my story if they ask or when the situation is suitable. But what if they don’t ask and I feel the need to tell them? How do I tell my story then? That has always been really hard, and in that’s what he was saying to me in that moment of empathy.

He gave me definition to my own struggles and the insight to see the struggles of so many who live with all things invisible, including mental illness and grief. I had never been one to judge someone else, but I would not say I was conscious someone may have something so significant below the surface. I have now learned to try to be fully aware of that in all interactions I have in my life.

You never know what someone else’s struggles are, sometimes even your own. I learned that about myself in a moment of true compassion.

Thank you for the gift!

The Mighty is asking the following:  Tell us about a stranger’s comment about your (or a loved one’s) disability, disease or mental illness that has stuck with you for one reason or another. Check out our Submit a Story page for more about our submission guidelines.

Originally published: June 24, 2016
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