Guest Voice: 3 coping tools help my fight against sickle cell disease

Richard Bayliss, 44, has hemoglobin SS, a severe form of sickle cell disease that comes with anemia; thus, it’s sometimes referred to as sickle cell anemia. He’s in the final year of a master’s degree in education, culture, and society at a university in London. He also works part time as a community support worker, helping vulnerable adults and those with mental health issues.

Managing sickle cell disease can be challenging at the best of times; it’s even complicated when we’re simply trying to live our lives. It seems to get in the way of work, school, children, family, social life, and all the ways we try to be ourselves.

What’s the solution to juggling all these commitments and sickle cell? Sadly, there’s no quick fix. Life takes over, and we must find ways to prioritize what we want most. Health, happiness, family, friends, or work: Which is it?

While I don’t know the right answer for you, here are three tools I use in my life with sickle cell that I hope will help you, too: willpower, resilience, and self-esteem.

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Identifying the tools

Willpower, to my mind, is about self-control. With more willpower, we’d eat the right kind of foods, always take medications on time, drink plenty of water to avoid dehydration, do the correct exercises to become strong, and achieve all sorts of other goals.

A 2011 survey from the American Psychological Association, ostensibly studying stress, suggested that a lack of willpower stopped its participants from making healthy lifestyle changes.

The research further suggested that three elements were vital in making these sorts of changes. The first was understanding your “why,” or your motivation for the change. The second was to monitor your progress toward your goal by keeping a check on your behavior. The third key element — yep, you guessed it — was willpower.

Meanwhile, resilience is the ability to cope with setbacks. Let’s face it: I can use many expletives to describe living with sickle cell disease. Instead, I try to develop resilience, which enables me to thrive.

Having a team or network, I’ve found, is vital to resilience. Doctors, nurses, psychologists, pain-management specialists, friends, and family are great parts of my network. Asking for help is important. After all, no one is an island.

Resilience and willpower are both words that set positive expectations. An increase in willpower may increase your resilience, too.

Finally, self-esteem has to do with valuing your own worth and your self-perception. It’s related to confidence and is referred to often when discussing mental health. As most of you have learned, self-esteem can run high or low, and each state can affect much of our lives.

People with sickle cell disease can experience low self-esteem because of the depression caused by pain and fatigue, which can often go undiagnosed. When faced with these challenges, it’s important to seek professional help.

With willpower, resilience, and self-esteem as three tools in your armory, I hope you’ll be better prepared to cope and handle many situations, including your fight against sickle cell disease.

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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.