The pains, emotions and struggles of families living with sickle cell, by Aisha Musa Auyo
September is globally declared Sickle Cell Awareness Month. The month is dedicated to raising awareness about sickle cell disease (SCD) and the challenges faced by those living with this inherited blood disorder. It serves as an opportunity to educate the public, promote early diagnosis, and advocate for better treatment options and research.
The month also highlights the importance of genetic screening, support for patients and families, and the need for increased funding to improve the quality of life for individuals affected by SCD. Through community events, health campaigns, and social media, advocates aim to bring attention to the urgent need for action and support for those impacted by sickle cell disease.
Today, I want to discuss sickle cell disease from a social and psychological perspective, rather than a medical one. While I’m not a medical doctor, I’ll focus on the impact this condition has on families and individuals beyond the clinical aspects.
Anyone who knows me as a relationship coach knows that I deeply love and believe in love. I advocate for it passionately. However, when it comes to marriage, love is just one of many essential foundations. I’ll be very realistic here—there’s much more needed to make a marriage thrive. We’re all witnesses to the struggles and the painful moments of crisis of sickle cell sufferers. We know how their parents strain to cope with the financial demands at times of crisis.
READ ALSO:Ignorance is not a bliss: A mother’s struggle with Sickle Cell, by Jamila Y. Suleiman
For AS-AS couples who choose to look beyond their genotype and marry for love, the romantic vision they once had is often overshadowed by constant worry, fear, and apprehension. The looming possibility of having a child with sickle cell disease adds significant stress. After having children, the anxiety only deepens, with parents constantly fearing an impending crisis or managing one. This often results in the other children not receiving the care and attention they need, as the focus shifts primarily to the sick child.
Sometimes, the mother has to forfeit most of her dreams and aspirations because she’s always in and out of the hospital. I don’t want to mention the fear, horror, and pain they endure whenever their kids are in the hospital. The hospital becomes the second home of sickle cell kids with their parents.
These parents hardly have any social life outside their homes and hospitals. The mothers, who are naturally more emotional, tend to be most affected by this.
Now, let’s discuss the pain and agony of sickle cell children. As much as I hate to write about it, it’s something we have to do. The pain experienced by a sickle cell patient is not only severe but often, unpredictable. It can occur when least expected.
The crisis stems from the sickle-shaped red blood cells that block blood flow, thereby reducing oxygen delivery to tissues and causing intense pain. The pain can affect various parts of the body, particularly the bones, joints, chest, and abdomen. It can be acute (lasting hours to days) or chronic (persistent over time). The episodes are triggered by stress, dehydration, cold, or infections. The ensuing pain can be debilitating, leading to hospitalizations and significantly affecting the patient’s quality of life.
As these children grow older, many develop feelings of resentment toward their parents. They feel that their parents prioritized their desires over the potential suffering of their children. Every painful episode and crisis can become a reminder of choices made without fully considering the long-term consequences. This resentment stems from a sense of betrayal, as they bear the physical and emotional toll of a decision that was not theirs to make. Parents often face this blame, which adds another layer of pain to an already difficult journey.
Parents in this situation are bound to carry the heavy burden of guilt and regret. Some marriages don’t survive the strain, leading to divorce, while others remain intact but with the painful decision to stop having children.
I’ve seen firsthand the difficult choices couples make, including terminating multiple pregnancies because the babies were predicted to have sickle cell disease. It begs the question—why start down this path in the first place, knowing the potential heartache? These are choices no one should have to make, and it’s a reminder of the importance of understanding genetic risks before taking that step.
Dear aspiring couples, Love, while beautiful, is not enough to withstand the many challenges that marriage brings. If both of you carry the AS genotype, I urge you to reconsider your relationship. There are many potential partners out there, and though it may be difficult, stepping away now could save you unimaginable heartache later. Trust me, it’s not worth the pain.
To couples already married with the AS genotype, please think carefully before bringing more children into the world. Consider the immense suffering that comes with sickle cell disease—for both you and your child. Spare them the pain and constant crises. Your love can be expressed in ways that protect their future.
Dear parents of children with sickle cell, my heart goes out to you. As a fellow parent, I can only imagine the trauma, pain, regrets, and difficult choices you face. The physical, financial, and emotional toll can feel overwhelming at times.
Please remember that this is beyond your control, and you are doing the best you can for your child. Stay strong and lean on each other for support. Don’t hesitate to seek help from family, and make time for yourselves to recharge. Remember, there’s a life outside the hospital and home—try to socialize and find moments of joy.
Connect with other parents who understand your journey, learn more about the best ways to care for your child, and never stop seeking knowledge. Above all, pray for Allah’s guidance and strength. You are not alone, and you will get through this.
Dear sickle cell warrior, please know that your parents deeply feel your pain. They live with a mix of empathy and guilt, wishing they could take away your suffering. While they can’t change the course of destiny, they are sacrificing so much to ensure you have the care and support you need. Their love for you runs incredibly deep, often even more so because of the battles you face. If they could go back and change things, they would do so in a heartbeat. Always remember, your health and happiness mean the world to them.
The spread of the sickle cell genotype can end, in a few generations when we intentionally avoid reproducing that genotype. It is a must for all of us to know our genotype before engaging in any serious relationship with the opposite gender. A stitch in time saves nine.
In my next outing on this topic, I will be dwelling on prevailing medical solutions in the management and treatment of sickle cell.
Aisha Musa Auyo is a Doctorate researcher in Educational Psychology. A wife, a mother, a homemaker, caterer, parenting, and relationship coach. She can be reached via https://www.facebook.com/aishamusa.auyo?mibextid=ZbWKwL and
aishamuauyo@live.co.uk
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You have just written about something that has been burning inside me. As a health professional and relative to many, I had an experience with a brother who is HbSS. I kept remembering from time to time how hard it was taking of him before his demise. May Allah forgive me, even though I was not his father the stress of going up and down from lab to pharmacy, pharmacy to blood bank made me exhausted. I hope many will read this and take the good advice into action. Thank you.
Thank you for sharing your heartfelt experience. Caring for a loved one, especially through such challenging circumstances, can be overwhelming, but your dedication and compassion are deeply commendable. May Allah grant you peace Your words will surely inspire others to take action and support those in need. Stay strong.
The article is heart touching as you extensively discussed the ailment and the circle it affects alongside it’s severity on the victims and their associates. A good number of parents found themselves in the situation as a result of ignorance, I’m sure this is one of the reasons why the campaign is intensified with a dedicated month.
Stopping the reproduction of the disorder in humans is supposed to be a major priority to society as a group and individuals in particular. It’s possible that the best of the critical stakeholders is not good enough with regards to the attention given to this all-important disorder.
The way the international community, governments, regulatory agencies and the society pay attention to diseases like HIV, Tuberculosis, Leprosy, Malaria, etc, similar attention should also be extended to Sickle Cell Disease. Religious organizations also have roles to play.
During premarriage counseling by religious institutions, hospital screening centres and the likes, SCD should be a major topic. While these are preventive measures, those living with it, their families and spouses should enjoy our sympathy, support, care and affection to endure and also find relief.
May Allah reward you for the wonderful piece. Thank you.
Yusuf Lawan Your comments and observations are always detailed and insightful. Thank you, Sir.
Thank you for sharing your heartfelt experience. Caring for a loved one, especially through such challenging circumstances, can be overwhelming, but your dedication and compassion are deeply commendable. May Allah grant you peace Your words will surely inspire others to take action and support those in need. Stay strong.
My heart is weeping