When family becomes the healthcare systemAcross many African communities, when someone becomes seriously or chronically ill, the first caregiver is rarely a professional. It may be a mother who stays awake through the night, a father searching for money for treatment, a sister accompanying her sibling to hospital, or a spouse who quietly reorganises an entire life around another person’s health.There is something deeply valuable about this culture of care. For generations, extended families and communities have provided a safety net during illness. Where formal services are limited, relatives, neighbours, friends and faith communities often step into the gap. They cook, clean, provide transport, raise money, accompany people to appointments, collect medication and sit beside hospital beds.Behind many people living with SCD, therefore, there is often somebody else carrying part of the burden. But we rarely ask: who is caring for the caregiver?The work we do not call workCaregiving is often described simply as something families do. A mother caring for her sick child may not call herself a caregiver. She is simply being a mother. A husband helping his wife through repeated hospital admissions may say he is doing what a husband should do.Yet love does not make the work effortless. Caregiving can involve disrupted sleep, hospital visits, medication management, cooking, bathing, transport, advocacy and emotional reassurance.It can also mean missed work, reduced income and personal plans repeatedly postponed. None of these sacrifices appears on a hospital bill, but somebody pays for them. Sometimes the currency is money. Sometimes it is time. Sometimes it is exhaustion. And sometimes it is the caregiver’s own health.Women and the expectation to careSee more Punch stories on Google.Add Punch on GoogleWe also need to talk about gender. Across different African societies and communities, caregiving responsibilities frequently fall heavily on women. Mothers, wives, daughters, sisters and daughters-in-law may be expected to care for children, older relatives and sick family members, often while managing households and earning an income.This should not be presented as though every African family is the same. Africa is a vast continent with enormous cultural, economic and social diversity. Nevertheless, expectations surrounding women’s caring roles deserve examination.There can be admiration for the woman who “copes with everything.” But sometimes our celebration of her strength prevents us from noticing her exhaustion. Being able to carry a heavy load does not mean the load is reasonable.For families affected by SCD, caregiving can begin very early. Parents may learn to recognise warning signs, manage pain at home and know when a situation requires urgent medical attention. They may have to explain their child’s condition repeatedly to schools, relatives and others who do not understand it.There may also be stigma and misinformation to contend with. As the child becomes an adult, the caregiving relationship changes but does not necessarily disappear. A severe crisis, stroke or other complication can suddenly make an independent adult dependent on family support again.This is one reason discussions about chronic illness should not focus exclusively on the patient. Illness happens to an individual, but its consequences can spread throughout a household. Community can be medicine too, yet I do not want this discussion to portray family caregiving merely as a problem.Related NewsSenegal-made sickle cell treatment raises hopes, reduces costsSCD and spiritual maturity vs toxic positivity: When “stay positive” is not enough in SCD (2)Don seeks review of Nigeria’s abortion lawsThere is tremendous strength in communal care. A relative bringing food to hospital, a church member offering transport, a neighbour checking on someone or family members pooling money for treatment may seem like small gestures. To someone facing illness, they can mean everything.There is dignity in knowing that illness has not made you disposable. That sense of belonging is something worth protecting. The danger comes when we begin assuming that because families will provide care, governments and healthcare systems do not need to provide enough support.Family love should complement healthcare. It should not have to replace it.When family becomes infrastructureThis is where the conversation becomes uncomfortable. If hospitals lack sufficient staff, families compensate.If transport to healthcare is difficult, families organise it. If medicines are unaffordable, relatives contribute. If someone needs help at home, another family member may reduce their working hours or stop working altogether. At what point does family resilience become an invisible subsidy to an inadequate system?We often praise African families for being resilient. Resilience is valuable. But we should be careful about celebrating people’s ability to survive circumstances that should have been improved. A healthcare system should not function on the assumption that there will always be an exhausted mother, sister, wife, husband or child available to fill the gaps.A different questionPerhaps we need to change the way we think about caregiving. Instead of asking only, “Does this patient have family support?” healthcare professionals might also ask: “What is this illness asking of the family?” Who is missing work? Who is losing sleep? Who is paying for transport? Who understands the medication? Who is frightened? And who is becoming exhausted while telling everyone else that they are fine?Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. Across many African communities, when someone becomes seriously or chronically ill, the first caregiver is rarely a professional. It may be a mother who stays awake through the night, a father searching for money for treatment, a sister accompanying her sibling to hospital, or a spouse who quietly reorganises an entire life around another person’s health.There is something deeply valuable about this culture of care. For generations, extended families and communities have provided a safety net during illness. Where formal services are limited, relatives, neighbours, friends and faith communities often step into the gap. They cook, clean, provide transport, raise money, accompany people to appointments, collect medication and sit beside hospital beds.Behind many people living with SCD, therefore, there is often somebody else carrying part of the burden. But we rarely ask: who is caring for the caregiver?The work we do not call workCaregiving is often described simply as something families do. A mother caring for her sick child may not call herself a caregiver. She is simply being a mother. A husband helping his wife through repeated hospital admissions may say he is doing what a husband should do.Yet love does not make the work effortless. Caregiving can involve disrupted sleep, hospital visits, medication management, cooking, bathing, transport, advocacy and emotional reassurance.It can also mean missed work, reduced income and personal plans repeatedly postponed. None of these sacrifices appears on a hospital bill, but somebody pays for them. Sometimes the currency is money. Sometimes it is time. Sometimes it is exhaustion. And sometimes it is the caregiver’s own health.Women and the expectation to careSee more Punch stories on Google.Add Punch on GoogleWe also need to talk about gender. Across different African societies and communities, caregiving responsibilities frequently fall heavily on women. Mothers, wives, daughters, sisters and daughters-in-law may be expected to care for children, older relatives and sick family members, often while managing households and earning an income.This should not be presented as though every African family is the same. Africa is a vast continent with enormous cultural, economic and social diversity. Nevertheless, expectations surrounding women’s caring roles deserve examination.There can be admiration for the woman who “copes with everything.” But sometimes our celebration of her strength prevents us from noticing her exhaustion. Being able to carry a heavy load does not mean the load is reasonable.For families affected by SCD, caregiving can begin very early. Parents may learn to recognise warning signs, manage pain at home and know when a situation requires urgent medical attention. They may have to explain their child’s condition repeatedly to schools, relatives and others who do not understand it.There may also be stigma and misinformation to contend with. As the child becomes an adult, the caregiving relationship changes but does not necessarily disappear. A severe crisis, stroke or other complication can suddenly make an independent adult dependent on family support again.This is one reason discussions about chronic illness should not focus exclusively on the patient. Illness happens to an individual, but its consequences can spread throughout a household. Community can be medicine too, yet I do not want this discussion to portray family caregiving merely as a problem.Related NewsSenegal-made sickle cell treatment raises hopes, reduces costsSCD and spiritual maturity vs toxic positivity: When “stay positive” is not enough in SCD (2)Don seeks review of Nigeria’s abortion lawsThere is tremendous strength in communal care. A relative bringing food to hospital, a church member offering transport, a neighbour checking on someone or family members pooling money for treatment may seem like small gestures. To someone facing illness, they can mean everything.There is dignity in knowing that illness has not made you disposable. That sense of belonging is something worth protecting. The danger comes when we begin assuming that because families will provide care, governments and healthcare systems do not need to provide enough support.Family love should complement healthcare. It should not have to replace it.When family becomes infrastructureThis is where the conversation becomes uncomfortable. If hospitals lack sufficient staff, families compensate.If transport to healthcare is difficult, families organise it. If medicines are unaffordable, relatives contribute. If someone needs help at home, another family member may reduce their working hours or stop working altogether. At what point does family resilience become an invisible subsidy to an inadequate system?We often praise African families for being resilient. Resilience is valuable. But we should be careful about celebrating people’s ability to survive circumstances that should have been improved. A healthcare system should not function on the assumption that there will always be an exhausted mother, sister, wife, husband or child available to fill the gaps.A different questionPerhaps we need to change the way we think about caregiving. Instead of asking only, “Does this patient have family support?” healthcare professionals might also ask: “What is this illness asking of the family?” Who is missing work? Who is losing sleep? Who is paying for transport? Who understands the medication? Who is frightened? And who is becoming exhausted while telling everyone else that they are fine?Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. There is something deeply valuable about this culture of care. For generations, extended families and communities have provided a safety net during illness. Where formal services are limited, relatives, neighbours, friends and faith communities often step into the gap. They cook, clean, provide transport, raise money, accompany people to appointments, collect medication and sit beside hospital beds.Behind many people living with SCD, therefore, there is often somebody else carrying part of the burden. But we rarely ask: who is caring for the caregiver?The work we do not call workCaregiving is often described simply as something families do. A mother caring for her sick child may not call herself a caregiver. She is simply being a mother. A husband helping his wife through repeated hospital admissions may say he is doing what a husband should do.Yet love does not make the work effortless. Caregiving can involve disrupted sleep, hospital visits, medication management, cooking, bathing, transport, advocacy and emotional reassurance.It can also mean missed work, reduced income and personal plans repeatedly postponed. None of these sacrifices appears on a hospital bill, but somebody pays for them. Sometimes the currency is money. Sometimes it is time. Sometimes it is exhaustion. And sometimes it is the caregiver’s own health.Women and the expectation to careSee more Punch stories on Google.Add Punch on GoogleWe also need to talk about gender. Across different African societies and communities, caregiving responsibilities frequently fall heavily on women. Mothers, wives, daughters, sisters and daughters-in-law may be expected to care for children, older relatives and sick family members, often while managing households and earning an income.This should not be presented as though every African family is the same. Africa is a vast continent with enormous cultural, economic and social diversity. Nevertheless, expectations surrounding women’s caring roles deserve examination.There can be admiration for the woman who “copes with everything.” But sometimes our celebration of her strength prevents us from noticing her exhaustion. Being able to carry a heavy load does not mean the load is reasonable.For families affected by SCD, caregiving can begin very early. Parents may learn to recognise warning signs, manage pain at home and know when a situation requires urgent medical attention. They may have to explain their child’s condition repeatedly to schools, relatives and others who do not understand it.There may also be stigma and misinformation to contend with. As the child becomes an adult, the caregiving relationship changes but does not necessarily disappear. A severe crisis, stroke or other complication can suddenly make an independent adult dependent on family support again.This is one reason discussions about chronic illness should not focus exclusively on the patient. Illness happens to an individual, but its consequences can spread throughout a household. Community can be medicine too, yet I do not want this discussion to portray family caregiving merely as a problem.Related NewsSenegal-made sickle cell treatment raises hopes, reduces costsSCD and spiritual maturity vs toxic positivity: When “stay positive” is not enough in SCD (2)Don seeks review of Nigeria’s abortion lawsThere is tremendous strength in communal care. A relative bringing food to hospital, a church member offering transport, a neighbour checking on someone or family members pooling money for treatment may seem like small gestures. To someone facing illness, they can mean everything.There is dignity in knowing that illness has not made you disposable. That sense of belonging is something worth protecting. The danger comes when we begin assuming that because families will provide care, governments and healthcare systems do not need to provide enough support.Family love should complement healthcare. It should not have to replace it.When family becomes infrastructureThis is where the conversation becomes uncomfortable. If hospitals lack sufficient staff, families compensate.If transport to healthcare is difficult, families organise it. If medicines are unaffordable, relatives contribute. If someone needs help at home, another family member may reduce their working hours or stop working altogether. At what point does family resilience become an invisible subsidy to an inadequate system?We often praise African families for being resilient. Resilience is valuable. But we should be careful about celebrating people’s ability to survive circumstances that should have been improved. A healthcare system should not function on the assumption that there will always be an exhausted mother, sister, wife, husband or child available to fill the gaps.A different questionPerhaps we need to change the way we think about caregiving. Instead of asking only, “Does this patient have family support?” healthcare professionals might also ask: “What is this illness asking of the family?” Who is missing work? Who is losing sleep? Who is paying for transport? Who understands the medication? Who is frightened? And who is becoming exhausted while telling everyone else that they are fine?Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. Behind many people living with SCD, therefore, there is often somebody else carrying part of the burden. But we rarely ask: who is caring for the caregiver?The work we do not call workCaregiving is often described simply as something families do. A mother caring for her sick child may not call herself a caregiver. She is simply being a mother. A husband helping his wife through repeated hospital admissions may say he is doing what a husband should do.Yet love does not make the work effortless. Caregiving can involve disrupted sleep, hospital visits, medication management, cooking, bathing, transport, advocacy and emotional reassurance.It can also mean missed work, reduced income and personal plans repeatedly postponed. None of these sacrifices appears on a hospital bill, but somebody pays for them. Sometimes the currency is money. Sometimes it is time. Sometimes it is exhaustion. And sometimes it is the caregiver’s own health.Women and the expectation to careSee more Punch stories on Google.Add Punch on GoogleWe also need to talk about gender. Across different African societies and communities, caregiving responsibilities frequently fall heavily on women. Mothers, wives, daughters, sisters and daughters-in-law may be expected to care for children, older relatives and sick family members, often while managing households and earning an income.This should not be presented as though every African family is the same. Africa is a vast continent with enormous cultural, economic and social diversity. Nevertheless, expectations surrounding women’s caring roles deserve examination.There can be admiration for the woman who “copes with everything.” But sometimes our celebration of her strength prevents us from noticing her exhaustion. Being able to carry a heavy load does not mean the load is reasonable.For families affected by SCD, caregiving can begin very early. Parents may learn to recognise warning signs, manage pain at home and know when a situation requires urgent medical attention. They may have to explain their child’s condition repeatedly to schools, relatives and others who do not understand it.There may also be stigma and misinformation to contend with. As the child becomes an adult, the caregiving relationship changes but does not necessarily disappear. A severe crisis, stroke or other complication can suddenly make an independent adult dependent on family support again.This is one reason discussions about chronic illness should not focus exclusively on the patient. Illness happens to an individual, but its consequences can spread throughout a household. Community can be medicine too, yet I do not want this discussion to portray family caregiving merely as a problem.Related NewsSenegal-made sickle cell treatment raises hopes, reduces costsSCD and spiritual maturity vs toxic positivity: When “stay positive” is not enough in SCD (2)Don seeks review of Nigeria’s abortion lawsThere is tremendous strength in communal care. A relative bringing food to hospital, a church member offering transport, a neighbour checking on someone or family members pooling money for treatment may seem like small gestures. To someone facing illness, they can mean everything.There is dignity in knowing that illness has not made you disposable. That sense of belonging is something worth protecting. The danger comes when we begin assuming that because families will provide care, governments and healthcare systems do not need to provide enough support.Family love should complement healthcare. It should not have to replace it.When family becomes infrastructureThis is where the conversation becomes uncomfortable. If hospitals lack sufficient staff, families compensate.If transport to healthcare is difficult, families organise it. If medicines are unaffordable, relatives contribute. If someone needs help at home, another family member may reduce their working hours or stop working altogether. At what point does family resilience become an invisible subsidy to an inadequate system?We often praise African families for being resilient. Resilience is valuable. But we should be careful about celebrating people’s ability to survive circumstances that should have been improved. A healthcare system should not function on the assumption that there will always be an exhausted mother, sister, wife, husband or child available to fill the gaps.A different questionPerhaps we need to change the way we think about caregiving. Instead of asking only, “Does this patient have family support?” healthcare professionals might also ask: “What is this illness asking of the family?” Who is missing work? Who is losing sleep? Who is paying for transport? Who understands the medication? Who is frightened? And who is becoming exhausted while telling everyone else that they are fine?Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. The work we do not call workCaregiving is often described simply as something families do. A mother caring for her sick child may not call herself a caregiver. She is simply being a mother. A husband helping his wife through repeated hospital admissions may say he is doing what a husband should do.Yet love does not make the work effortless. Caregiving can involve disrupted sleep, hospital visits, medication management, cooking, bathing, transport, advocacy and emotional reassurance.It can also mean missed work, reduced income and personal plans repeatedly postponed. None of these sacrifices appears on a hospital bill, but somebody pays for them. Sometimes the currency is money. Sometimes it is time. Sometimes it is exhaustion. And sometimes it is the caregiver’s own health.Women and the expectation to careSee more Punch stories on Google.Add Punch on GoogleWe also need to talk about gender. Across different African societies and communities, caregiving responsibilities frequently fall heavily on women. Mothers, wives, daughters, sisters and daughters-in-law may be expected to care for children, older relatives and sick family members, often while managing households and earning an income.This should not be presented as though every African family is the same. Africa is a vast continent with enormous cultural, economic and social diversity. Nevertheless, expectations surrounding women’s caring roles deserve examination.There can be admiration for the woman who “copes with everything.” But sometimes our celebration of her strength prevents us from noticing her exhaustion. Being able to carry a heavy load does not mean the load is reasonable.For families affected by SCD, caregiving can begin very early. Parents may learn to recognise warning signs, manage pain at home and know when a situation requires urgent medical attention. They may have to explain their child’s condition repeatedly to schools, relatives and others who do not understand it.There may also be stigma and misinformation to contend with. As the child becomes an adult, the caregiving relationship changes but does not necessarily disappear. A severe crisis, stroke or other complication can suddenly make an independent adult dependent on family support again.This is one reason discussions about chronic illness should not focus exclusively on the patient. Illness happens to an individual, but its consequences can spread throughout a household. Community can be medicine too, yet I do not want this discussion to portray family caregiving merely as a problem.Related NewsSenegal-made sickle cell treatment raises hopes, reduces costsSCD and spiritual maturity vs toxic positivity: When “stay positive” is not enough in SCD (2)Don seeks review of Nigeria’s abortion lawsThere is tremendous strength in communal care. A relative bringing food to hospital, a church member offering transport, a neighbour checking on someone or family members pooling money for treatment may seem like small gestures. To someone facing illness, they can mean everything.There is dignity in knowing that illness has not made you disposable. That sense of belonging is something worth protecting. The danger comes when we begin assuming that because families will provide care, governments and healthcare systems do not need to provide enough support.Family love should complement healthcare. It should not have to replace it.When family becomes infrastructureThis is where the conversation becomes uncomfortable. If hospitals lack sufficient staff, families compensate.If transport to healthcare is difficult, families organise it. If medicines are unaffordable, relatives contribute. If someone needs help at home, another family member may reduce their working hours or stop working altogether. At what point does family resilience become an invisible subsidy to an inadequate system?We often praise African families for being resilient. Resilience is valuable. But we should be careful about celebrating people’s ability to survive circumstances that should have been improved. A healthcare system should not function on the assumption that there will always be an exhausted mother, sister, wife, husband or child available to fill the gaps.A different questionPerhaps we need to change the way we think about caregiving. Instead of asking only, “Does this patient have family support?” healthcare professionals might also ask: “What is this illness asking of the family?” Who is missing work? Who is losing sleep? Who is paying for transport? Who understands the medication? Who is frightened? And who is becoming exhausted while telling everyone else that they are fine?Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. Caregiving is often described simply as something families do. A mother caring for her sick child may not call herself a caregiver. She is simply being a mother. A husband helping his wife through repeated hospital admissions may say he is doing what a husband should do.Yet love does not make the work effortless. Caregiving can involve disrupted sleep, hospital visits, medication management, cooking, bathing, transport, advocacy and emotional reassurance.It can also mean missed work, reduced income and personal plans repeatedly postponed. None of these sacrifices appears on a hospital bill, but somebody pays for them. Sometimes the currency is money. Sometimes it is time. Sometimes it is exhaustion. And sometimes it is the caregiver’s own health.Women and the expectation to careSee more Punch stories on Google.Add Punch on GoogleWe also need to talk about gender. Across different African societies and communities, caregiving responsibilities frequently fall heavily on women. Mothers, wives, daughters, sisters and daughters-in-law may be expected to care for children, older relatives and sick family members, often while managing households and earning an income.This should not be presented as though every African family is the same. Africa is a vast continent with enormous cultural, economic and social diversity. Nevertheless, expectations surrounding women’s caring roles deserve examination.There can be admiration for the woman who “copes with everything.” But sometimes our celebration of her strength prevents us from noticing her exhaustion. Being able to carry a heavy load does not mean the load is reasonable.For families affected by SCD, caregiving can begin very early. Parents may learn to recognise warning signs, manage pain at home and know when a situation requires urgent medical attention. They may have to explain their child’s condition repeatedly to schools, relatives and others who do not understand it.There may also be stigma and misinformation to contend with. As the child becomes an adult, the caregiving relationship changes but does not necessarily disappear. A severe crisis, stroke or other complication can suddenly make an independent adult dependent on family support again.This is one reason discussions about chronic illness should not focus exclusively on the patient. Illness happens to an individual, but its consequences can spread throughout a household. Community can be medicine too, yet I do not want this discussion to portray family caregiving merely as a problem.Related NewsSenegal-made sickle cell treatment raises hopes, reduces costsSCD and spiritual maturity vs toxic positivity: When “stay positive” is not enough in SCD (2)Don seeks review of Nigeria’s abortion lawsThere is tremendous strength in communal care. A relative bringing food to hospital, a church member offering transport, a neighbour checking on someone or family members pooling money for treatment may seem like small gestures. To someone facing illness, they can mean everything.There is dignity in knowing that illness has not made you disposable. That sense of belonging is something worth protecting. The danger comes when we begin assuming that because families will provide care, governments and healthcare systems do not need to provide enough support.Family love should complement healthcare. It should not have to replace it.When family becomes infrastructureThis is where the conversation becomes uncomfortable. If hospitals lack sufficient staff, families compensate.If transport to healthcare is difficult, families organise it. If medicines are unaffordable, relatives contribute. If someone needs help at home, another family member may reduce their working hours or stop working altogether. At what point does family resilience become an invisible subsidy to an inadequate system?We often praise African families for being resilient. Resilience is valuable. But we should be careful about celebrating people’s ability to survive circumstances that should have been improved. A healthcare system should not function on the assumption that there will always be an exhausted mother, sister, wife, husband or child available to fill the gaps.A different questionPerhaps we need to change the way we think about caregiving. Instead of asking only, “Does this patient have family support?” healthcare professionals might also ask: “What is this illness asking of the family?” Who is missing work? Who is losing sleep? Who is paying for transport? Who understands the medication? Who is frightened? And who is becoming exhausted while telling everyone else that they are fine?Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. Yet love does not make the work effortless. Caregiving can involve disrupted sleep, hospital visits, medication management, cooking, bathing, transport, advocacy and emotional reassurance.It can also mean missed work, reduced income and personal plans repeatedly postponed. None of these sacrifices appears on a hospital bill, but somebody pays for them. Sometimes the currency is money. Sometimes it is time. Sometimes it is exhaustion. And sometimes it is the caregiver’s own health.Women and the expectation to careSee more Punch stories on Google.Add Punch on GoogleWe also need to talk about gender. Across different African societies and communities, caregiving responsibilities frequently fall heavily on women. Mothers, wives, daughters, sisters and daughters-in-law may be expected to care for children, older relatives and sick family members, often while managing households and earning an income.This should not be presented as though every African family is the same. Africa is a vast continent with enormous cultural, economic and social diversity. Nevertheless, expectations surrounding women’s caring roles deserve examination.There can be admiration for the woman who “copes with everything.” But sometimes our celebration of her strength prevents us from noticing her exhaustion. Being able to carry a heavy load does not mean the load is reasonable.For families affected by SCD, caregiving can begin very early. Parents may learn to recognise warning signs, manage pain at home and know when a situation requires urgent medical attention. They may have to explain their child’s condition repeatedly to schools, relatives and others who do not understand it.There may also be stigma and misinformation to contend with. As the child becomes an adult, the caregiving relationship changes but does not necessarily disappear. A severe crisis, stroke or other complication can suddenly make an independent adult dependent on family support again.This is one reason discussions about chronic illness should not focus exclusively on the patient. Illness happens to an individual, but its consequences can spread throughout a household. Community can be medicine too, yet I do not want this discussion to portray family caregiving merely as a problem.Related NewsSenegal-made sickle cell treatment raises hopes, reduces costsSCD and spiritual maturity vs toxic positivity: When “stay positive” is not enough in SCD (2)Don seeks review of Nigeria’s abortion lawsThere is tremendous strength in communal care. A relative bringing food to hospital, a church member offering transport, a neighbour checking on someone or family members pooling money for treatment may seem like small gestures. To someone facing illness, they can mean everything.There is dignity in knowing that illness has not made you disposable. That sense of belonging is something worth protecting. The danger comes when we begin assuming that because families will provide care, governments and healthcare systems do not need to provide enough support.Family love should complement healthcare. It should not have to replace it.When family becomes infrastructureThis is where the conversation becomes uncomfortable. If hospitals lack sufficient staff, families compensate.If transport to healthcare is difficult, families organise it. If medicines are unaffordable, relatives contribute. If someone needs help at home, another family member may reduce their working hours or stop working altogether. At what point does family resilience become an invisible subsidy to an inadequate system?We often praise African families for being resilient. Resilience is valuable. But we should be careful about celebrating people’s ability to survive circumstances that should have been improved. A healthcare system should not function on the assumption that there will always be an exhausted mother, sister, wife, husband or child available to fill the gaps.A different questionPerhaps we need to change the way we think about caregiving. Instead of asking only, “Does this patient have family support?” healthcare professionals might also ask: “What is this illness asking of the family?” Who is missing work? Who is losing sleep? Who is paying for transport? Who understands the medication? Who is frightened? And who is becoming exhausted while telling everyone else that they are fine?Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. It can also mean missed work, reduced income and personal plans repeatedly postponed. None of these sacrifices appears on a hospital bill, but somebody pays for them. Sometimes the currency is money. Sometimes it is time. Sometimes it is exhaustion. And sometimes it is the caregiver’s own health.Women and the expectation to careSee more Punch stories on Google.Add Punch on GoogleWe also need to talk about gender. Across different African societies and communities, caregiving responsibilities frequently fall heavily on women. Mothers, wives, daughters, sisters and daughters-in-law may be expected to care for children, older relatives and sick family members, often while managing households and earning an income.This should not be presented as though every African family is the same. Africa is a vast continent with enormous cultural, economic and social diversity. Nevertheless, expectations surrounding women’s caring roles deserve examination.There can be admiration for the woman who “copes with everything.” But sometimes our celebration of her strength prevents us from noticing her exhaustion. Being able to carry a heavy load does not mean the load is reasonable.For families affected by SCD, caregiving can begin very early. Parents may learn to recognise warning signs, manage pain at home and know when a situation requires urgent medical attention. They may have to explain their child’s condition repeatedly to schools, relatives and others who do not understand it.There may also be stigma and misinformation to contend with. As the child becomes an adult, the caregiving relationship changes but does not necessarily disappear. A severe crisis, stroke or other complication can suddenly make an independent adult dependent on family support again.This is one reason discussions about chronic illness should not focus exclusively on the patient. Illness happens to an individual, but its consequences can spread throughout a household. Community can be medicine too, yet I do not want this discussion to portray family caregiving merely as a problem.Related NewsSenegal-made sickle cell treatment raises hopes, reduces costsSCD and spiritual maturity vs toxic positivity: When “stay positive” is not enough in SCD (2)Don seeks review of Nigeria’s abortion lawsThere is tremendous strength in communal care. A relative bringing food to hospital, a church member offering transport, a neighbour checking on someone or family members pooling money for treatment may seem like small gestures. To someone facing illness, they can mean everything.There is dignity in knowing that illness has not made you disposable. That sense of belonging is something worth protecting. The danger comes when we begin assuming that because families will provide care, governments and healthcare systems do not need to provide enough support.Family love should complement healthcare. It should not have to replace it.When family becomes infrastructureThis is where the conversation becomes uncomfortable. If hospitals lack sufficient staff, families compensate.If transport to healthcare is difficult, families organise it. If medicines are unaffordable, relatives contribute. If someone needs help at home, another family member may reduce their working hours or stop working altogether. At what point does family resilience become an invisible subsidy to an inadequate system?We often praise African families for being resilient. Resilience is valuable. But we should be careful about celebrating people’s ability to survive circumstances that should have been improved. A healthcare system should not function on the assumption that there will always be an exhausted mother, sister, wife, husband or child available to fill the gaps.A different questionPerhaps we need to change the way we think about caregiving. Instead of asking only, “Does this patient have family support?” healthcare professionals might also ask: “What is this illness asking of the family?” Who is missing work? Who is losing sleep? Who is paying for transport? Who understands the medication? Who is frightened? And who is becoming exhausted while telling everyone else that they are fine?Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. Women and the expectation to careSee more Punch stories on Google.Add Punch on GoogleWe also need to talk about gender. Across different African societies and communities, caregiving responsibilities frequently fall heavily on women. Mothers, wives, daughters, sisters and daughters-in-law may be expected to care for children, older relatives and sick family members, often while managing households and earning an income.This should not be presented as though every African family is the same. Africa is a vast continent with enormous cultural, economic and social diversity. Nevertheless, expectations surrounding women’s caring roles deserve examination.There can be admiration for the woman who “copes with everything.” But sometimes our celebration of her strength prevents us from noticing her exhaustion. Being able to carry a heavy load does not mean the load is reasonable.For families affected by SCD, caregiving can begin very early. Parents may learn to recognise warning signs, manage pain at home and know when a situation requires urgent medical attention. They may have to explain their child’s condition repeatedly to schools, relatives and others who do not understand it.There may also be stigma and misinformation to contend with. As the child becomes an adult, the caregiving relationship changes but does not necessarily disappear. A severe crisis, stroke or other complication can suddenly make an independent adult dependent on family support again.This is one reason discussions about chronic illness should not focus exclusively on the patient. Illness happens to an individual, but its consequences can spread throughout a household. Community can be medicine too, yet I do not want this discussion to portray family caregiving merely as a problem.Related NewsSenegal-made sickle cell treatment raises hopes, reduces costsSCD and spiritual maturity vs toxic positivity: When “stay positive” is not enough in SCD (2)Don seeks review of Nigeria’s abortion lawsThere is tremendous strength in communal care. A relative bringing food to hospital, a church member offering transport, a neighbour checking on someone or family members pooling money for treatment may seem like small gestures. To someone facing illness, they can mean everything.There is dignity in knowing that illness has not made you disposable. That sense of belonging is something worth protecting. The danger comes when we begin assuming that because families will provide care, governments and healthcare systems do not need to provide enough support.Family love should complement healthcare. It should not have to replace it.When family becomes infrastructureThis is where the conversation becomes uncomfortable. If hospitals lack sufficient staff, families compensate.If transport to healthcare is difficult, families organise it. If medicines are unaffordable, relatives contribute. If someone needs help at home, another family member may reduce their working hours or stop working altogether. At what point does family resilience become an invisible subsidy to an inadequate system?We often praise African families for being resilient. Resilience is valuable. But we should be careful about celebrating people’s ability to survive circumstances that should have been improved. A healthcare system should not function on the assumption that there will always be an exhausted mother, sister, wife, husband or child available to fill the gaps.A different questionPerhaps we need to change the way we think about caregiving. Instead of asking only, “Does this patient have family support?” healthcare professionals might also ask: “What is this illness asking of the family?” Who is missing work? Who is losing sleep? Who is paying for transport? Who understands the medication? Who is frightened? And who is becoming exhausted while telling everyone else that they are fine?Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. We also need to talk about gender. Across different African societies and communities, caregiving responsibilities frequently fall heavily on women. Mothers, wives, daughters, sisters and daughters-in-law may be expected to care for children, older relatives and sick family members, often while managing households and earning an income.This should not be presented as though every African family is the same. Africa is a vast continent with enormous cultural, economic and social diversity. Nevertheless, expectations surrounding women’s caring roles deserve examination.There can be admiration for the woman who “copes with everything.” But sometimes our celebration of her strength prevents us from noticing her exhaustion. Being able to carry a heavy load does not mean the load is reasonable.For families affected by SCD, caregiving can begin very early. Parents may learn to recognise warning signs, manage pain at home and know when a situation requires urgent medical attention. They may have to explain their child’s condition repeatedly to schools, relatives and others who do not understand it.There may also be stigma and misinformation to contend with. As the child becomes an adult, the caregiving relationship changes but does not necessarily disappear. A severe crisis, stroke or other complication can suddenly make an independent adult dependent on family support again.This is one reason discussions about chronic illness should not focus exclusively on the patient. Illness happens to an individual, but its consequences can spread throughout a household. Community can be medicine too, yet I do not want this discussion to portray family caregiving merely as a problem.Related NewsSenegal-made sickle cell treatment raises hopes, reduces costsSCD and spiritual maturity vs toxic positivity: When “stay positive” is not enough in SCD (2)Don seeks review of Nigeria’s abortion lawsThere is tremendous strength in communal care. A relative bringing food to hospital, a church member offering transport, a neighbour checking on someone or family members pooling money for treatment may seem like small gestures. To someone facing illness, they can mean everything.There is dignity in knowing that illness has not made you disposable. That sense of belonging is something worth protecting. The danger comes when we begin assuming that because families will provide care, governments and healthcare systems do not need to provide enough support.Family love should complement healthcare. It should not have to replace it.When family becomes infrastructureThis is where the conversation becomes uncomfortable. If hospitals lack sufficient staff, families compensate.If transport to healthcare is difficult, families organise it. If medicines are unaffordable, relatives contribute. If someone needs help at home, another family member may reduce their working hours or stop working altogether. At what point does family resilience become an invisible subsidy to an inadequate system?We often praise African families for being resilient. Resilience is valuable. But we should be careful about celebrating people’s ability to survive circumstances that should have been improved. A healthcare system should not function on the assumption that there will always be an exhausted mother, sister, wife, husband or child available to fill the gaps.A different questionPerhaps we need to change the way we think about caregiving. Instead of asking only, “Does this patient have family support?” healthcare professionals might also ask: “What is this illness asking of the family?” Who is missing work? Who is losing sleep? Who is paying for transport? Who understands the medication? Who is frightened? And who is becoming exhausted while telling everyone else that they are fine?Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. This should not be presented as though every African family is the same. Africa is a vast continent with enormous cultural, economic and social diversity. Nevertheless, expectations surrounding women’s caring roles deserve examination.There can be admiration for the woman who “copes with everything.” But sometimes our celebration of her strength prevents us from noticing her exhaustion. Being able to carry a heavy load does not mean the load is reasonable.For families affected by SCD, caregiving can begin very early. Parents may learn to recognise warning signs, manage pain at home and know when a situation requires urgent medical attention. They may have to explain their child’s condition repeatedly to schools, relatives and others who do not understand it.There may also be stigma and misinformation to contend with. As the child becomes an adult, the caregiving relationship changes but does not necessarily disappear. A severe crisis, stroke or other complication can suddenly make an independent adult dependent on family support again.This is one reason discussions about chronic illness should not focus exclusively on the patient. Illness happens to an individual, but its consequences can spread throughout a household. Community can be medicine too, yet I do not want this discussion to portray family caregiving merely as a problem.Related NewsSenegal-made sickle cell treatment raises hopes, reduces costsSCD and spiritual maturity vs toxic positivity: When “stay positive” is not enough in SCD (2)Don seeks review of Nigeria’s abortion lawsThere is tremendous strength in communal care. A relative bringing food to hospital, a church member offering transport, a neighbour checking on someone or family members pooling money for treatment may seem like small gestures. To someone facing illness, they can mean everything.There is dignity in knowing that illness has not made you disposable. That sense of belonging is something worth protecting. The danger comes when we begin assuming that because families will provide care, governments and healthcare systems do not need to provide enough support.Family love should complement healthcare. It should not have to replace it.When family becomes infrastructureThis is where the conversation becomes uncomfortable. If hospitals lack sufficient staff, families compensate.If transport to healthcare is difficult, families organise it. If medicines are unaffordable, relatives contribute. If someone needs help at home, another family member may reduce their working hours or stop working altogether. At what point does family resilience become an invisible subsidy to an inadequate system?We often praise African families for being resilient. Resilience is valuable. But we should be careful about celebrating people’s ability to survive circumstances that should have been improved. A healthcare system should not function on the assumption that there will always be an exhausted mother, sister, wife, husband or child available to fill the gaps.A different questionPerhaps we need to change the way we think about caregiving. Instead of asking only, “Does this patient have family support?” healthcare professionals might also ask: “What is this illness asking of the family?” Who is missing work? Who is losing sleep? Who is paying for transport? Who understands the medication? Who is frightened? And who is becoming exhausted while telling everyone else that they are fine?Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. There can be admiration for the woman who “copes with everything.” But sometimes our celebration of her strength prevents us from noticing her exhaustion. Being able to carry a heavy load does not mean the load is reasonable.For families affected by SCD, caregiving can begin very early. Parents may learn to recognise warning signs, manage pain at home and know when a situation requires urgent medical attention. They may have to explain their child’s condition repeatedly to schools, relatives and others who do not understand it.There may also be stigma and misinformation to contend with. As the child becomes an adult, the caregiving relationship changes but does not necessarily disappear. A severe crisis, stroke or other complication can suddenly make an independent adult dependent on family support again.This is one reason discussions about chronic illness should not focus exclusively on the patient. Illness happens to an individual, but its consequences can spread throughout a household. Community can be medicine too, yet I do not want this discussion to portray family caregiving merely as a problem.Related NewsSenegal-made sickle cell treatment raises hopes, reduces costsSCD and spiritual maturity vs toxic positivity: When “stay positive” is not enough in SCD (2)Don seeks review of Nigeria’s abortion lawsThere is tremendous strength in communal care. A relative bringing food to hospital, a church member offering transport, a neighbour checking on someone or family members pooling money for treatment may seem like small gestures. To someone facing illness, they can mean everything.There is dignity in knowing that illness has not made you disposable. That sense of belonging is something worth protecting. The danger comes when we begin assuming that because families will provide care, governments and healthcare systems do not need to provide enough support.Family love should complement healthcare. It should not have to replace it.When family becomes infrastructureThis is where the conversation becomes uncomfortable. If hospitals lack sufficient staff, families compensate.If transport to healthcare is difficult, families organise it. If medicines are unaffordable, relatives contribute. If someone needs help at home, another family member may reduce their working hours or stop working altogether. At what point does family resilience become an invisible subsidy to an inadequate system?We often praise African families for being resilient. Resilience is valuable. But we should be careful about celebrating people’s ability to survive circumstances that should have been improved. A healthcare system should not function on the assumption that there will always be an exhausted mother, sister, wife, husband or child available to fill the gaps.A different questionPerhaps we need to change the way we think about caregiving. Instead of asking only, “Does this patient have family support?” healthcare professionals might also ask: “What is this illness asking of the family?” Who is missing work? Who is losing sleep? Who is paying for transport? Who understands the medication? Who is frightened? And who is becoming exhausted while telling everyone else that they are fine?Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. For families affected by SCD, caregiving can begin very early. Parents may learn to recognise warning signs, manage pain at home and know when a situation requires urgent medical attention. They may have to explain their child’s condition repeatedly to schools, relatives and others who do not understand it.There may also be stigma and misinformation to contend with. As the child becomes an adult, the caregiving relationship changes but does not necessarily disappear. A severe crisis, stroke or other complication can suddenly make an independent adult dependent on family support again.This is one reason discussions about chronic illness should not focus exclusively on the patient. Illness happens to an individual, but its consequences can spread throughout a household. Community can be medicine too, yet I do not want this discussion to portray family caregiving merely as a problem.Related NewsSenegal-made sickle cell treatment raises hopes, reduces costsSCD and spiritual maturity vs toxic positivity: When “stay positive” is not enough in SCD (2)Don seeks review of Nigeria’s abortion lawsThere is tremendous strength in communal care. A relative bringing food to hospital, a church member offering transport, a neighbour checking on someone or family members pooling money for treatment may seem like small gestures. To someone facing illness, they can mean everything.There is dignity in knowing that illness has not made you disposable. That sense of belonging is something worth protecting. The danger comes when we begin assuming that because families will provide care, governments and healthcare systems do not need to provide enough support.Family love should complement healthcare. It should not have to replace it.When family becomes infrastructureThis is where the conversation becomes uncomfortable. If hospitals lack sufficient staff, families compensate.If transport to healthcare is difficult, families organise it. If medicines are unaffordable, relatives contribute. If someone needs help at home, another family member may reduce their working hours or stop working altogether. At what point does family resilience become an invisible subsidy to an inadequate system?We often praise African families for being resilient. Resilience is valuable. But we should be careful about celebrating people’s ability to survive circumstances that should have been improved. A healthcare system should not function on the assumption that there will always be an exhausted mother, sister, wife, husband or child available to fill the gaps.A different questionPerhaps we need to change the way we think about caregiving. Instead of asking only, “Does this patient have family support?” healthcare professionals might also ask: “What is this illness asking of the family?” Who is missing work? Who is losing sleep? Who is paying for transport? Who understands the medication? Who is frightened? And who is becoming exhausted while telling everyone else that they are fine?Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. There may also be stigma and misinformation to contend with. As the child becomes an adult, the caregiving relationship changes but does not necessarily disappear. A severe crisis, stroke or other complication can suddenly make an independent adult dependent on family support again.This is one reason discussions about chronic illness should not focus exclusively on the patient. Illness happens to an individual, but its consequences can spread throughout a household. Community can be medicine too, yet I do not want this discussion to portray family caregiving merely as a problem.Related NewsSenegal-made sickle cell treatment raises hopes, reduces costsSCD and spiritual maturity vs toxic positivity: When “stay positive” is not enough in SCD (2)Don seeks review of Nigeria’s abortion lawsThere is tremendous strength in communal care. A relative bringing food to hospital, a church member offering transport, a neighbour checking on someone or family members pooling money for treatment may seem like small gestures. To someone facing illness, they can mean everything.There is dignity in knowing that illness has not made you disposable. That sense of belonging is something worth protecting. The danger comes when we begin assuming that because families will provide care, governments and healthcare systems do not need to provide enough support.Family love should complement healthcare. It should not have to replace it.When family becomes infrastructureThis is where the conversation becomes uncomfortable. If hospitals lack sufficient staff, families compensate.If transport to healthcare is difficult, families organise it. If medicines are unaffordable, relatives contribute. If someone needs help at home, another family member may reduce their working hours or stop working altogether. At what point does family resilience become an invisible subsidy to an inadequate system?We often praise African families for being resilient. Resilience is valuable. But we should be careful about celebrating people’s ability to survive circumstances that should have been improved. A healthcare system should not function on the assumption that there will always be an exhausted mother, sister, wife, husband or child available to fill the gaps.A different questionPerhaps we need to change the way we think about caregiving. Instead of asking only, “Does this patient have family support?” healthcare professionals might also ask: “What is this illness asking of the family?” Who is missing work? Who is losing sleep? Who is paying for transport? Who understands the medication? Who is frightened? And who is becoming exhausted while telling everyone else that they are fine?Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. This is one reason discussions about chronic illness should not focus exclusively on the patient. Illness happens to an individual, but its consequences can spread throughout a household. Community can be medicine too, yet I do not want this discussion to portray family caregiving merely as a problem.Related NewsSenegal-made sickle cell treatment raises hopes, reduces costsSCD and spiritual maturity vs toxic positivity: When “stay positive” is not enough in SCD (2)Don seeks review of Nigeria’s abortion lawsThere is tremendous strength in communal care. A relative bringing food to hospital, a church member offering transport, a neighbour checking on someone or family members pooling money for treatment may seem like small gestures. To someone facing illness, they can mean everything.There is dignity in knowing that illness has not made you disposable. That sense of belonging is something worth protecting. The danger comes when we begin assuming that because families will provide care, governments and healthcare systems do not need to provide enough support.Family love should complement healthcare. It should not have to replace it.When family becomes infrastructureThis is where the conversation becomes uncomfortable. If hospitals lack sufficient staff, families compensate.If transport to healthcare is difficult, families organise it. If medicines are unaffordable, relatives contribute. If someone needs help at home, another family member may reduce their working hours or stop working altogether. At what point does family resilience become an invisible subsidy to an inadequate system?We often praise African families for being resilient. Resilience is valuable. But we should be careful about celebrating people’s ability to survive circumstances that should have been improved. A healthcare system should not function on the assumption that there will always be an exhausted mother, sister, wife, husband or child available to fill the gaps.A different questionPerhaps we need to change the way we think about caregiving. Instead of asking only, “Does this patient have family support?” healthcare professionals might also ask: “What is this illness asking of the family?” Who is missing work? Who is losing sleep? Who is paying for transport? Who understands the medication? Who is frightened? And who is becoming exhausted while telling everyone else that they are fine?Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. There is tremendous strength in communal care. A relative bringing food to hospital, a church member offering transport, a neighbour checking on someone or family members pooling money for treatment may seem like small gestures. To someone facing illness, they can mean everything.There is dignity in knowing that illness has not made you disposable. That sense of belonging is something worth protecting. The danger comes when we begin assuming that because families will provide care, governments and healthcare systems do not need to provide enough support.Family love should complement healthcare. It should not have to replace it.When family becomes infrastructureThis is where the conversation becomes uncomfortable. If hospitals lack sufficient staff, families compensate.If transport to healthcare is difficult, families organise it. If medicines are unaffordable, relatives contribute. If someone needs help at home, another family member may reduce their working hours or stop working altogether. At what point does family resilience become an invisible subsidy to an inadequate system?We often praise African families for being resilient. Resilience is valuable. But we should be careful about celebrating people’s ability to survive circumstances that should have been improved. A healthcare system should not function on the assumption that there will always be an exhausted mother, sister, wife, husband or child available to fill the gaps.A different questionPerhaps we need to change the way we think about caregiving. Instead of asking only, “Does this patient have family support?” healthcare professionals might also ask: “What is this illness asking of the family?” Who is missing work? Who is losing sleep? Who is paying for transport? Who understands the medication? Who is frightened? And who is becoming exhausted while telling everyone else that they are fine?Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. There is dignity in knowing that illness has not made you disposable. That sense of belonging is something worth protecting. The danger comes when we begin assuming that because families will provide care, governments and healthcare systems do not need to provide enough support.Family love should complement healthcare. It should not have to replace it.When family becomes infrastructureThis is where the conversation becomes uncomfortable. If hospitals lack sufficient staff, families compensate.If transport to healthcare is difficult, families organise it. If medicines are unaffordable, relatives contribute. If someone needs help at home, another family member may reduce their working hours or stop working altogether. At what point does family resilience become an invisible subsidy to an inadequate system?We often praise African families for being resilient. Resilience is valuable. But we should be careful about celebrating people’s ability to survive circumstances that should have been improved. A healthcare system should not function on the assumption that there will always be an exhausted mother, sister, wife, husband or child available to fill the gaps.A different questionPerhaps we need to change the way we think about caregiving. Instead of asking only, “Does this patient have family support?” healthcare professionals might also ask: “What is this illness asking of the family?” Who is missing work? Who is losing sleep? Who is paying for transport? Who understands the medication? Who is frightened? And who is becoming exhausted while telling everyone else that they are fine?Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. Family love should complement healthcare. It should not have to replace it.When family becomes infrastructureThis is where the conversation becomes uncomfortable. If hospitals lack sufficient staff, families compensate.If transport to healthcare is difficult, families organise it. If medicines are unaffordable, relatives contribute. If someone needs help at home, another family member may reduce their working hours or stop working altogether. At what point does family resilience become an invisible subsidy to an inadequate system?We often praise African families for being resilient. Resilience is valuable. But we should be careful about celebrating people’s ability to survive circumstances that should have been improved. A healthcare system should not function on the assumption that there will always be an exhausted mother, sister, wife, husband or child available to fill the gaps.A different questionPerhaps we need to change the way we think about caregiving. Instead of asking only, “Does this patient have family support?” healthcare professionals might also ask: “What is this illness asking of the family?” Who is missing work? Who is losing sleep? Who is paying for transport? Who understands the medication? Who is frightened? And who is becoming exhausted while telling everyone else that they are fine?Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. When family becomes infrastructureThis is where the conversation becomes uncomfortable. If hospitals lack sufficient staff, families compensate.If transport to healthcare is difficult, families organise it. If medicines are unaffordable, relatives contribute. If someone needs help at home, another family member may reduce their working hours or stop working altogether. At what point does family resilience become an invisible subsidy to an inadequate system?We often praise African families for being resilient. Resilience is valuable. But we should be careful about celebrating people’s ability to survive circumstances that should have been improved. A healthcare system should not function on the assumption that there will always be an exhausted mother, sister, wife, husband or child available to fill the gaps.A different questionPerhaps we need to change the way we think about caregiving. Instead of asking only, “Does this patient have family support?” healthcare professionals might also ask: “What is this illness asking of the family?” Who is missing work? Who is losing sleep? Who is paying for transport? Who understands the medication? Who is frightened? And who is becoming exhausted while telling everyone else that they are fine?Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. This is where the conversation becomes uncomfortable. If hospitals lack sufficient staff, families compensate.If transport to healthcare is difficult, families organise it. If medicines are unaffordable, relatives contribute. If someone needs help at home, another family member may reduce their working hours or stop working altogether. At what point does family resilience become an invisible subsidy to an inadequate system?We often praise African families for being resilient. Resilience is valuable. But we should be careful about celebrating people’s ability to survive circumstances that should have been improved. A healthcare system should not function on the assumption that there will always be an exhausted mother, sister, wife, husband or child available to fill the gaps.A different questionPerhaps we need to change the way we think about caregiving. Instead of asking only, “Does this patient have family support?” healthcare professionals might also ask: “What is this illness asking of the family?” Who is missing work? Who is losing sleep? Who is paying for transport? Who understands the medication? Who is frightened? And who is becoming exhausted while telling everyone else that they are fine?Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. If transport to healthcare is difficult, families organise it. If medicines are unaffordable, relatives contribute. If someone needs help at home, another family member may reduce their working hours or stop working altogether. At what point does family resilience become an invisible subsidy to an inadequate system?We often praise African families for being resilient. Resilience is valuable. But we should be careful about celebrating people’s ability to survive circumstances that should have been improved. A healthcare system should not function on the assumption that there will always be an exhausted mother, sister, wife, husband or child available to fill the gaps.A different questionPerhaps we need to change the way we think about caregiving. Instead of asking only, “Does this patient have family support?” healthcare professionals might also ask: “What is this illness asking of the family?” Who is missing work? Who is losing sleep? Who is paying for transport? Who understands the medication? Who is frightened? And who is becoming exhausted while telling everyone else that they are fine?Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. We often praise African families for being resilient. Resilience is valuable. But we should be careful about celebrating people’s ability to survive circumstances that should have been improved. A healthcare system should not function on the assumption that there will always be an exhausted mother, sister, wife, husband or child available to fill the gaps.A different questionPerhaps we need to change the way we think about caregiving. Instead of asking only, “Does this patient have family support?” healthcare professionals might also ask: “What is this illness asking of the family?” Who is missing work? Who is losing sleep? Who is paying for transport? Who understands the medication? Who is frightened? And who is becoming exhausted while telling everyone else that they are fine?Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. A different questionPerhaps we need to change the way we think about caregiving. Instead of asking only, “Does this patient have family support?” healthcare professionals might also ask: “What is this illness asking of the family?” Who is missing work? Who is losing sleep? Who is paying for transport? Who understands the medication? Who is frightened? And who is becoming exhausted while telling everyone else that they are fine?Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. Perhaps we need to change the way we think about caregiving. Instead of asking only, “Does this patient have family support?” healthcare professionals might also ask: “What is this illness asking of the family?” Who is missing work? Who is losing sleep? Who is paying for transport? Who understands the medication? Who is frightened? And who is becoming exhausted while telling everyone else that they are fine?Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. Those questions matter because supporting caregivers ultimately supports patients.African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. African cultures of family and community care contain something precious: the belief that people should not face suffering alone. We should preserve that. But we must also reject the idea that love means limitless sacrifice.The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. The strongest healthcare system is not one in which families are expected to do everything. It is one that recognises families as partners, gives them information and support, and steps in before caring becomes overwhelming. Because behind many people living with chronic illness is another person quietly holding things together. And perhaps it is time we asked how they are doing too.If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. If you would like to get in touch with me about sickle cell, do so via my email address:[email protected]. And do check out my blog: www.dailylivingwithsicklecell.com.My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com. My book on sickle cell – HOW TO LIVE WITH SICKLE CELL, and my other books are available for purchase on www.amazon.com.