Finding Comfort Among Other Sickle Cell Patients

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by Tito Oye |

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Yesterday, I was reminded why it’s so beneficial to talk with other people in the sickle cell community.

Producers from the YouTube channel Make It Common asked me to participate in an episode about sickle cell disease. They invited five people with the condition, including fellow Sickle Cell Disease News columnist Dunstan Nicol-Wilson and me, to have a panel discussion about our experiences.

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As someone who is known for raising awareness of sickle cell, I am often asked to speak on various shows, YouTube channels, and podcasts. More often than not, I’ll agree and do my bit to educate those who are willing to learn. However, this experience was one of the few that I’ve really enjoyed and personally benefited from.

Although producers had several questions prepared, our conversation flowed so well that prompts weren’t needed. If not for the tight filming schedule, we likely would have kept talking for hours.

We spoke about our childhood, families, and hardships. We laughed together and shared advice. There are many online sickle cell communities, many of which I’m part of, but having these conversations in person felt much more meaningful.

When speaking with the average person about my health, they often sympathize with me. However, when I speak with other people with sickle cell, they are able to empathize with me. I find that fellow sickle cell patients are far more understanding and offer more helpful advice. This is purely because they can relate to my experiences, as they have lived through the same situations themselves.

In speaking with the other panelists, I didn’t have to downplay my experiences to prevent them from feeling uncomfortable, which is what I usually do when talking to people who don’t have sickle cell. It was a very refreshing experience, and I left wondering why I don’t do this more often.

I highly recommend meeting with people in your community, as I believe many people could benefit from this type of connection, both mentally and physically.

If you live with a chronic illness, do any of your friends have the same condition? If so, do you notice any differences in the ways you interact or feel when you’re around them? Please share in the comments below.

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Note: Sickle Cell Disease 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 Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.

Comments

efe ates avatar

efe ates

It is really good to find yourself among other patients, because the problem of all of you is the same, it is much better to share and discuss problems together, but sometimes it seems like people are very careless and only think about themselves.

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Tito Oye avatar

Tito Oye

Hey Efe,
I agree, sharing problems with people can be very beneficial, but it is also important to be careful of who you share with as not everyone has your best interests at heart!

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