Why I’m constantly feeling guilty because of sickle cell disease

A few weeks ago, I was in excruciating pain in the dead of the night. I’m not one to disturb others when I’m in pain unless it’s severe and I need help to manage it. This night was one of those exceptions, and I had to reluctantly wake up my mum to ask for her assistance.

She quickly got me the medication I needed, but unfortunately, the pain persisted. As I lay there, writhing in agony, I could see her sitting beside me looking extremely worried. Despite my reassurances that she could go back to sleep, she refused to leave my side, choosing to stay with me instead and offer what comfort she could.

As I tossed and turned in bed in pain, I glanced at my mum, who is in her 70s, and I couldn’t help but feel a pang of guilt.

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My mum is a hardworking woman. I call her a workaholic. She’s an administrator of a group of schools and a pastor, and works from morning till night. So I always want her to rest at night. I hated to take that away from her.

This wasn’t the first time I felt this way. I sometimes feel guilty when my family members have to care for me despite being happy to do it. Although we don’t talk about this much, I’ve come to realize that many sickle cell disease patients experience what I call “warrior’s guilt.” It’s a feeling of remorse that comes with knowing that our loved ones have to care for us, often at the expense of their rest, work, and well-being.

The weight of this guilt has prompted me to opt for paid caregivers. Having paid caregivers frees me from the burden of guilt, allowing me to accept their help without the added emotional weight.

Growing up, another source of guilt I struggled with was how much my parents had to spend on my healthcare compared with my siblings. They also sometimes had to prioritize my needs because of my health. A huge part of the family’s attention and finances went to me instead of my siblings, which made me feel bad.

Health is wealth

As I entered the workforce, a new wave of guilt emerged. Whenever my health complications compromise my productivity or force me to take sick leave, I feel a deep sense of sadness and guilt. Despite my colleagues’ support and understanding, I can’t shake off the guilt that accompanies each missed workday. I feel bad that I’m not around and that my colleagues have an extra workload in my absence.

This is one source of guilt that might never go away, but when it happens, I’ve learned to reframe my mindset. I remind myself that health is indeed wealth, and taking the time to rest and recover is essential to regaining my strength and productivity. By acknowledging the necessity of self-care, I’m able to temper my guilt and focus on my journey toward wellness.

I’m not alone in feeling this way. Many sickle cell patients feel guilty when they’re unable to fulfill their duties, whether it’s at work, in their relationships, or as caregivers for their own families. Some feel guilty when they need assistance with daily activities or they’re unable to attend important events. Some feel guilty when their health challenges prevent them from meeting the expectations their family members have for them.

To all my fellow sickle cell warriors: Your feelings are valid, but don’t get lost in your guilt and let your feelings define you. You’re not a burden; you’re a special, strong, and resilient individual who deserves love, care, and respect. Surround yourself with people who uplift and support you, and don’t be afraid to communicate your needs and feelings.

If there are steps you can take to lessen your feelings of guilt, such as opting for paid caregivers like I did, feel free to do so. Just ensure that your paid caregivers are kindhearted and passionate about their work.

Always remember that you are more than just a sickle cell patient. Never forget to keep dreaming, work on your goals, and continue to achieve them. If you have to let go of a dream due to sickle cell, find another realistic one to pursue. Most importantly, prioritize your happiness.

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.