Lessons on communication from living with sickle cell disease

“Thank you for giving me grace while I dropped off the face of the earth last week.”

I regularly make this kind of comment to my best friend, who has known me since I was 4 years old. Because of sickle cell disease, I sometimes neglect to respond when she attempts to contact me. Thankfully, we’re able to pick up where we left off after I provide a health update, which typically explains my poor communication.

I frequently give thanks for my support system and look forward to detailing in a future column the positive impact these people have had on my life. However, we’re not always surrounded by our best friends and family members, and not everyone is so understanding of the challenges that accompany a chronic disease. As a young adult, this is something I’ve just begun to learn.

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Deciding when to disclose

Several weeks ago, I described the symptoms I experience most often of sickle beta-zero thalassemia. While vaso-occlusive crises and acute chest syndrome aren’t frequent issues for me, I do often have chronic pain, extreme fatigue, and resulting mental health challenges.

Although I’m aware of my symptoms and limitations, and am now in my third year of working toward a doctorate in psychology, I still struggle to communicate these challenges to others.

In psychology, the act of sharing personal details about ourselves is known as self-disclosure. I know research has shown that telling people information about ourselves makes them feel closer to us. However, when I make a new friend at yoga class or trivia events, I never think to say, “Hi, I’m Michelle. Just a heads-up, I have sickle cell disease, so when you ask me to get coffee next week, just know that I fully intend to come but might cancel the morning of because I’m in too much pain to leave the house.”

The alternative, though, is being known as the flaky friend.

The past year brought several health challenges for me, and with them came new lessons on communication and self-disclosure. After nearly a year of severe abdominal pain caused by gallstones, I finally had my gallbladder removed in the spring. During that time, I often said yes to plans I couldn’t keep, then felt guilty for canceling or disappearing without explanation. I spent a lot of time questioning whether my sickle cell was a “valid” reason to cancel plans and rest, even though logically I understood that these choices help keep me out of the hospital.

I’ve learned that not everyone will understand my life with sickle cell disease, and that’s OK. Some people have chosen to step back, and others have chosen to stay and support me. I’m deeply grateful for both. Managing this illness will always be a challenge, but with experience and continued honesty with myself and others, I’m slowly learning how to navigate adulthood with strength and grace.

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.