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Learn how to move from family sacrifice to family support for those with Sickle Cell Disease (SCD) by supporting caregivers' well-being and needs.
Two weeks ago, I wrote about the culture of caregiving across many African communities and the extraordinary role families often play when someone becomes ill.
I also raised an uncomfortable question: when does family support stop being a beautiful expression of love and start becoming an invisible substitute for services that should exist? This week, I want to move the conversation forward.
Recognising the burden is important, but recognition alone will not help the mother who has been awake all night with a child in pain, the husband repeatedly missing work to accompany his wife to hospital, or the sibling whose own plans are constantly rearranged around someone else’s illness. One of the simplest changes healthcare professionals can make is to ask about the person providing care. We routinely ask patients about medication, pain and symptoms.
How often do we ask, “Who helps you at home? ” And having identified that person, how often do we ask the caregiver, “How are you coping? ” That question can uncover exhaustion, financial difficulty, anxiety and gaps in understanding that might otherwise remain hidden. Caregivers should be recognised as important partners in healthcare while, of course, respecting the patient’s privacy, independence and wishes.
Families cannot be expected to manage complex illnesses without information. In Sickle Cell Disease, for example, families may need to understand pain management, hydration, medication, warning signs and when urgent medical attention is necessary. Education should not happen only during a crisis. Hospitals and clinics can provide accessible information, caregiver sessions and opportunities to ask questions.
Patient organisations and community groups can also play an important role. Knowledge will not remove the burden of caregiving, but it can remove some of the fear and uncertainty. We also need to acknowledge the emotional consequences of watching someone you love experience repeated illness. Caregivers can be frightened, frustrated, angry and exhausted.
Some may feel guilty for having those emotions. They should not. Loving someone does not prevent you from becoming tired. Peer-support groups, counselling and simply having somewhere safe to speak honestly can make a difference.
We should normalise caregivers saying, “I need help,” before they reach breaking point. Chronic illness does not disappear when somebody goes to work. A parent may receive a telephone call saying their child has suddenly become unwell. A spouse may need to accompany their partner to hospital.
Someone may spend the night in an emergency department and still be expected at work the following morning. Where possible, employers can help through compassionate leave, flexible working and understanding around medical emergencies. Supporting caregivers is not about removing responsibility from employees. It is about recognising that people have lives and responsibilities beyond the workplace.
Faith communities are another important part of this conversation. Across many African communities, churches, mosques and other faith networks provide tremendous emotional and spiritual support during illness. Prayer matters deeply to many families. But sometimes the answer to “How can we help?
” needs to extend beyond prayer. Perhaps somebody can prepare a meal. Perhaps someone can provide transport to hospital, stay with the patient for a few hours, help with childcare or contribute towards an urgent expense. Sometimes the most spiritual thing we can do is something practical.
When a child has a chronic condition such as SCD, family life can understandably revolve around that child’s medical needs. But other children are watching too. They may love their brother or sister deeply while simultaneously feeling frightened, overlooked or even resentful. Those emotions do not make them bad siblings.
Parents and professionals should make space for their questions and feelings too. The effects of chronic illness can travel through an entire household. Ultimately, however, we cannot solve caregiver burden by simply asking families to become even more resilient. Governments and health systems need to consider what families actually require: accessible healthcare, affordable medicines, adequately staffed services, reliable information, community-based support and stronger systems for managing chronic conditions.
Where resources permit, respite and practical social support can give exhausted caregivers something incredibly valuable: time to rest. Financial hardship also needs to be part of the conversation. When caregiving repeatedly removes someone from paid employment while treatment and transport generate additional costs, illness can affect the economic wellbeing of an entire household. Family love cannot solve that problem alone.
Perhaps one of the hardest changes must happen within families themselves. We need to challenge the belief that a “good” caregiver must sacrifice everything. A mother can love her child and still need rest. A husband can adore his wife and still feel overwhelmed.
A daughter can care deeply for an ageing parent and still have ambitions of her own. Rest is not abandonment. Asking another relative to help is not selfishness. Seeking counselling is not weakness.
And having moments of happiness while somebody you love is ill is not betrayal. Caregivers are human beings before they are caregivers. Africa does not need to abandon its tradition of caring for one another. Our extended families, neighbours, friendships and faith communities can offer something profoundly valuable: the assurance that illness does not have to be faced alone.
What must change is the assumption that because families care, they can carry an unlimited burden. We need to move from celebrating caregiver sacrifice to building systems that make such sacrifice less necessary. That requires action from hospitals, employers, governments, communities, faith organisations and families themselves. Perhaps the next time we encounter someone living with SCD or another chronic illness, we should ask how they are coping.
But then we should look beside them. There may be a mother, father, spouse, sibling, relative or friend quietly carrying bags, organising appointments, finding money, losing sleep and trying to remain strong. Ask them too.
“How are you? And what would make caring a little easier for you? ” Because if we truly believe in caring for one another, our compassion cannot stop with the patient. My book on Sickle Cell, HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com.
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