A New Friend Taught Me to Never Fear Telling Our Stories

“Not everything that is faced can be changed, but nothing can be changed until it is faced.” — James A. Baldwin

Recently, I was asked an unusual and interesting question: “Do you know anyone personally that has sarcoidosis?”

After a few seconds of thinking about an answer, I had to admit I didn’t.

At the time, I didn’t think it was an unusual question being asked by a fellow “sarc warrior,” but I didn’t give it a second thought. Honestly, when I tell folks that I have sarcoidosis, their response seems to be one of pity. My reaction is to smile and let them know that it doesn’t stop me from doing my thing.

After that initial awkward moment, I’ll give them a little bit of information about it from what I know, and I’ll let them know it hasn’t stopped me from doing the things I love to do. I tell them that pulmonary sarcoidosis has slowed me down when doing some of the things I love, but it hasn’t stopped me. I can tell after that comment whether or not I have their vote of confidence.

I had the pleasure of making the acquaintance of a fellow television and video professional named John Carlin. Carlin is a news anchor at WSLS 10 in Roanoke, Virginia. Like me, he’s living with sarcoidosis. He’s also an avid cyclist, which I love to do but can’t anymore unless I’m on a stationary bike in the gym.

Carlin discusses sarcoidosis in a 2017 blog post titled “Rough Roads: Cycling with Sarcoidosis” and in a podcast called “Sarc Fighter,” where he interviews folks making a difference while living with sarcoidosis. He also shares a wealth of resources and information about sarcoidosis that members of our community can benefit from.

A few weeks ago, I had the pleasure of participating in one of Carlin’s podcasts. I was thankful and grateful that he wanted to speak with me, but also that I was able to tell my story to someone who understood the trials and tribulations we go through. It was like chatting with an old friend.

I encourage you to have a listen to our podcast, and please check out the information and resources that Carlin has been so kind to collect. Hopefully, it will encourage more people to lend an ear to better understand what life is like with sarcoidosis.

“Become the kind of person who brightens a room just by entering it.” — H. Jackson Brown Jr.

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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.