A New Friend Taught Me to Never Fear Telling Our Stories

Don't be afraid to tell your story!

Charlton Harris avatar

by Charlton Harris |

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“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.

Comments

JANICE NICHOLLS avatar

JANICE NICHOLLS

I need to get my Story down on paper before I die. I hope it will be a lesson for Doctors.

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Charlton Harris avatar

Charlton Harris

That's what I'm doing. Hopefully I can help others understand they're not alone in this!

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Chorlottiea Harris avatar

Chorlottiea Harris

Thank you for Caring and Sharing I have been living with Sarcoidosis from Childhood and Now Present Day was
Sarcoidosis has attack Every Major Organ in my Body Except my Brain. I use Scripture and the Poems that God 🙏 gave me to get Through My Days alone with Exercise.
My Favorite Scripture is Ezekiel 47:9 Where God River Flow it Brings Life 🧬 Thank you for Sharing
Sincerely Chorlottiea Harris

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Charlton Harris avatar

Charlton Harris

Thank you Chorlottiea for reading! I make it a point to fallback on scriptures that I've read as a child. I have one book, "God's promise book" that has helped a great deal. Other books you can check out is:
Og Mandino- "The Greatest Salesman in the world." (His other books too)
Charles Capps- "The tongue-A creative force"
I have others, but I have to find them, I've collected them over the years.
Please check them out and thanks again for including me!
Peace!🙏🏽🙏🏽🙏🏽
-C-

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Terrilyon James avatar

Terrilyon James

I am so proud of your “watch me live attitude”! You are inspiring so many with your positive attitude towards life! Keep on living, grilling and grinning you do it well!

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Charlton Harris avatar

Charlton Harris

Thank you for reading. You believing in me is a huge help to me?
Peace!
-C-

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Al Deas avatar

Al Deas

Thanks for sharing.

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Charlton Harris avatar

Charlton Harris

Thanks for reading, Al-
I hope you'll continue to read my column and find some peace that you're not alone in this battle.
Peace!
-C-

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Gail Smalls avatar

Gail Smalls

I am grateful for having a place to share this information. Thank you for sharing!

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Charlton Harris avatar

Charlton Harris

Thank you for taking time to read my column, it means a lot. My hope is that I'm helping others living with this "inconvenience" realize they are not alone...WE are not alone!
Peace & continued blessings!
-c-

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John Carlin avatar

John Carlin

Hi Charlton! Thanks again for the interview and for having the courage to lay it all out there. Thanks also for the mention in the blog! Take care and stay in touch! -

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Charlton Harris avatar

Charlton Harris

Thanks for having me, John. It was my pleasure. I hope we can do it again!
-C-

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Matthew Rey avatar

Matthew Rey

Yes sarc has taken over my life and i would like to share some of my story. How would I get started? My names matthew and I'm living with sarc of the lungs and its affected every moment of my life.. The stories I read give me hope and strength.. Transplant is the next thing on my list but I am still far from being well enough for this to happen. Thanks to all of you guys and keep praying and be positive to your fullest no matter what.

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Charlton Harris avatar

Charlton Harris

Thanks for writing Matthew. I've spent several weeks going back and forth top the hospital, so forgive my late response. Rule#1- write down all thoughts!! You'll be surprised how that can help get your thoughts together. I'm currently working on a bigger project- stay tuned and thanks for participating in the dialogue!🙏🏽👍🏽

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DebbraP avatar

DebbraP

I very much enjoyed the podcast, thank you for sharing it, Charlton. I haven't thought much of my own story but I am basically just getting started on this Sarc journey (diagnosed with pulmonary sarc in 2019 and on oxygen 24/7). Just when I thought my husband understood my story, he passed away. I am now going to be moving in with family across the states, a different kind of journey. But I will have to tell them my story and hope they "get it". Perhaps I will direct them to this site and to the podcasts.

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Charlton Harris avatar

Charlton Harris

Thanks for listening, Deb. Please write down your story, trust me it helps. Never get discouraged or afraid to yell your story... it's yours, share it you may be helping someone!👍🏽🙏🏽

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