Family members who care for individuals living with mental illness shoulder a massive load. While numerous studies have shed light on the ways these family caregivers go above and beyond, it’s through listening to their stories that we truly understand the weight they bear.
The Burden of Sympathy by David A. Karp provides an opportunity to do just that. Published in 2002 (the same year the Well Community began), this book offers a window into the perpetual challenges caregivers face as they determine their responsibilities to their loved ones and weather the realities of ongoing mental health challenges. Drawing from interviews with 60 individuals caring for loved ones dealing with mental illness, The Burden of Sympathy sheds light on common struggles, allowing their personal accounts to tell the complicated story of caregiving. Below are six insights drawn from its pages.
- Caregivers navigate an evolving tangle of responsibilities and boundaries. As they learn more about their loved ones’ conditions, they often must re-evaluate how much they can and should do to help. The understanding that their family member’s illnesses have no cure often leads them to reconsider their obligations and desires to care not just for a time but for the long term. Likewise, as symptoms change or as the individuals dealing with mental illness take or relinquish responsibility for managing their conditions, their family members continually rethink their roles.
- Caregivers ride a common emotional roller coaster. Karp describes the “emotional anomie” caregivers experience before their loved ones receive a diagnosis: They’re bewildered by their family members’ behavior and don’t know what to feel. Once their loved ones’ struggle has a name, this sense of confusion is replaced at least in part by compassion, sympathy and hope for a solution, as well as a sense of willing obligation to care. But, as they discover that the illness is around for good, they often wrestle with anger, frustration and resentment, as well as grapple with guilt over these emotions.
- Caregivers’ roles are shaped by their place in a family. Though every family is different, Karp found that parents, children and spouses of individuals dealing with serious mental health challenges had a greater sense of obligation to care than siblings or extended family members. In addition, regardless of the nature of the relationship, women tended to bear a greater weight of caregiving duties than men. And all take on responsibilities they didn’t ask for—responsibilities that fall on them simply because of their place in a family.
- Caregivers protect their wellbeing by reminding themselves of what they’re not responsible for. As family members grapple with doubts and fears regarding their role in their loved ones’ illness, they often must frequently remind themselves that they did not cause the condition, nor can they control or cure it. These reassurances underscore the struggle to believe that they are not to blame.
- Caregivers’ roles are often complicated by health care and social systems. When families seek professional support for their loved ones, they frequently find that the entities that they expect to provide help and relief instead cause deep frustration. Karp writes, “Caregivers quickly realize that each part of the bureaucratic network operates in terms of a set of requirements that typically do not fit well with their own needs, concerns and anxieties. Rather than minimize their pain, encounters with the system too often exacerbate their troubles.”
- Caregivers operate in a culture of mixed messages. Though Karp’s words focus on American culture at the turn of the 21st century, his assertion that caregivers wrestle with contradictory ideas still rings true. In a society that proclaims both that family members should support, love and protect one another at all costs and that every person has the right to pursue personal happiness, those who care for loved ones dealing with mental illness are presented with two opposing ideals. These messages often amplify their struggles with how to provide care.
Coming Alongside Caregivers
Many members of the Well Community don’t have access to their families. For them, the Well Community is their family, providing a place where those who live with serious mental health challenges can find practical assistance and welcoming friendships, as well as connect with others who understand.
For those who do receive support from family members, the Well comes alongside caregivers through case management services, helping members access resources such as food stamps, clothing, housing and transportation, and connecting members with health care providers. And, by giving members a place to belong, it offers them vital peer support that family members alone cannot easily provide.
Your gift will help the Well Community continue to serve as a family for those living with serious mental illness, providing support and community.