Coping with Parental Guilt in Sickle Cell Disease Management

Having a child with sickle cell disease can prompt many emotions for parents

Having a child with sickle cell disease can prompt many emotions for parents, particularly guilt. In this column, I’ll discuss some of the factors that contribute to this type of guilt and provide guidance on how to cope with it.

In my many years of living with sickle cell disease, as well as observing other sickle cell parents and caregivers, I’ve witnessed parental guilt in various ways. While my father tends to conceal his negative emotions in front of me, my mother openly expresses her guilt, particularly when I am in pain or experiencing other complications related to sickle cell. I could see her tears and the guilt etched on her face.

Other parents of children with sickle cell disease also have confided in me that they feel guilty, which inspired me to address this topic.

Causes of parental guilt
When caring for a child with sickle cell disease, various factors can contribute to parental guilt. For biological parents, the primary source of guilt is the knowledge that they passed on the sickle cell gene, and that sickle cell is a preventable condition. In my parents’ case, they were completely unaware of the disease. I’ve observed them occasionally wishing they had been more knowledgeable about it in order to have prevented it.

Furthermore, witnessing one’s child endure pain crises can be an agonizing experience. This is a significant source of guilt for my parents, as they question whether they could’ve done something more to prevent or alleviate my pain.

Challenges related to sickle cell disease have significantly affected my activities, social life, and career choices. Due to these limitations, I’ve frequently seen my parents grapple with guilt.

Additionally, parents often feel a sense of guilt when their child experiences complications. One of the most profound instances of guilt I ever observed was when my mother saw me having difficulty walking in my early 20s due to avascular necrosis (the death of bone tissue due to a lack of blood supply). She would cry every time she saw me, to the point where I started avoiding her because her negative emotions negatively affected me, until she was able to work through her guilt.

Other factors that contribute to parental guilt include the impact of the disease on siblings, having to make tough treatment decisions, witnessing stigma and discrimination toward one’s child, and comparing one’s child with healthy children.

Handling parental guilt

Despite the rarity of discussions about parental guilt, it is a common phenomenon that negatively affects both parents and children living with the disease. Parents must find ways to overcome this guilt for the sake of their mental well-being as well as that of their child. Being in a negative emotional state as a caregiver can inflict emotional trauma on the child.

If you’re the parent of a child with sickle cell disease and you’re experiencing guilty feelings because of it, the following are some ways I believe you can address the guilt.

First, it’s crucial to acknowledge that blame and guilt are unproductive emotions that won’t improve the situation for you or your child. Your child already lives with the disease, and you can’t change the past. Shift your mindset from guilt to empowerment. Instead of dwelling on what you cannot change, focus on what you can do to support your child’s health and well-being. Don’t forget to avoid having more children with the disease.

Embrace the journey and recognize that being the parent of a child with sickle cell disease involves both challenges and triumphs. Embrace the opportunity to grow, learn, advocate, and adequately care for your child. Your love and support will make a significant difference in their life.

Educate yourself about the disease to better manage your child’s condition. Treat their pain and complications effectively to improve their well-being. Consider joining support groups, where you can share your experiences and pain with other parents who understand what you’re going through. If needed, seek therapy to help you process and cope with your emotions. Prioritize self-care to ensure you are mentally and emotionally equipped to provide support.

Most importantly, focus on the positives. Celebrate your child’s strengths and achievements. Remember that they are not defined by their illness but by their unique qualities and potential. It’s not easy, but do not neglect your other children; show them they are also cherished.

Handling parental guilt takes time and self-reflection. It’s essential to be patient with yourself as you navigate these complex emotions. By practicing self-compassion, seeking support, and focusing on your child’s well-being, you can gradually find acceptance and peace within yourself.

Always remember that you don’t have to navigate this alone. You can seek professional help and join support groups to get the needed help.