Please Be Mindful When Speaking to Someone With a Chronic Illness

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by Tito Oye |

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When speaking to a person with a chronic illness, you might do and say things with the best of intentions, but sometimes it may not translate well. Following are some of the things I don’t like to hear.

Apologies

Sometimes when I tell someone I have sickle cell disease, they’ll instantly apologize. I don’t believe this is the best response.

To me, apologizing to someone with a chronic condition is like assuming they are suffering because of their health. Things may not be amazing when it comes to dealing with sickle cell, but I love my life regardless, and I love all of the things that make me who I am.

I know some people whose chronic conditions developed later in life. In these situations, they often mourn their previous, healthier life. While I sympathize, I can’t empathize.

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Sickle cell is a genetic condition, and those of us that have it experience it from birth. Life with sickle cell is all I have known, and I have been learning to thrive with it my entire life. When people apologize to me because I don’t live a normal life, I feel pretty awkward and never know how to react.

Treatment recommendations

Because of the platforms I have and my willingness to be so open about my health, many people — including complete strangers — send me messages urging me to consider a bone marrow/stem cell transplant to help treat my sickle cell disease. Again, I know that people mean well by suggesting I go through this procedure, but it’s not something I enjoy discussing, and I currently have no intention of having the procedure done, at least not yet.

I can assure you that no one is more informed about their options than a person with a chronic illness. If something exists that could potentially cure us of our condition, trust me that we have done our due diligence, considered all of our options, and made an informed decision. If that decision is to live life while managing the condition instead of going through with a treatment, please believe that there is a good reason!

I consider myself very lucky with my health. I am doing an OK job of minimizing the number of sickle cell symptoms I experience, and the thought of going through a stem cell transplant seems too risky at the moment.

Health conditions are not spoken about as much as we would like. Due to a lack of awareness about some conditions, people who aren’t affected by chronic illness are unaware of the best ways to interact with the people who have these conditions.

Hopefully, this column has provided some insight about better ways to interact with people with health conditions. If you have a chronic condition, what don’t you like to hear? 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

Joshua Ampofo Yentumi avatar

Joshua Ampofo Yentumi

It's so annoying when people tell you about this treatment or that treatment...Jeez I can totally relate. It gets very frustrating.

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Stacey Francis avatar

Stacey Francis

I have a podcast and would like you to speak about Sickle Cell. I too have SCA and would like people to know more about it. Let me know if you are interested.

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