Redefining Hope

As medicine and science continue to make advancements, we find more and more that our loved ones are able to live with chronic illness and injury. From children diagnosed with illness at young ages but able to live with management of their condition, all the way through to adults and elders who are later diagnosed with chronic illness and injury but through medications and interventions are able to maintain “life.” There is a wealth of research and literature about what grief and loss look like within the context of a death. More specifically, this literature covers many areas such as how the individual approaching end of life can make peace with their situation, and also how the loved ones who survive the dead can begin to process their grief and what the “healthy” stages of grieving look like. But what about the loss and grief that surround chronic illness and injury? Here at Sharon Horn Consulting, we work with many individuals who are struggling with the losses they have endured as a result of an injury or chronic illness or perhaps the injury/chronic illness of a child. Thus, we felt it was important to shed light upon the psychosocial impacts of this topic and also the lack of attention that it receives.

Whether it is you who is struggling with chronic illness or it is a loved one such as a child, we all have pictures of what our life might look like or what our children’s lives may look like one day. Wrapped up in these images are hopes, dreams, some uncertainty, but also excitement and anticipation. Imagine an individual with chronic illness or injury forever walking down a dividing line between their past and their future. Looking backward, the individual can see everything their injury or illness has taken from them or forced them to relinquish, and looking forward nothing seems quite clear. While there is no going back to the past, the future is quite uncertain.

According to an interesting article we read in Social Work Today titled Grieving Chronic Illness and Injury- Infinite Losses,

The experience of chronic illness is invariably one of accruing myriad losses, the depth and breadth of which depend on the severity of the illness and the limitations it imposes. The first most obvious- the loss of good health and robustness- kick-starts a cascade of forfeitures called network losses. Depending on the nature of the illness, these losses may include comfort, sexual function, career, income, self-efficacy, freedom, cognitive function, intimacy, pride, joy, self-esteem, self-control, independence, mental health, hope, dignity, and certainty…Although the losses may be vast, the grief they arouse likely will go unrecognized or unaddressed- oversights that can have severe consequences.

So what do those consequences look like and how can we become more aware of the sense of grief and loss that accompanies chronic illness and injury? The loss of function associated with the illness/injury, and the subsequent loss of status or identity can diminish self-esteem and fracture body image, which in turn fuels anxiety and depression.  The totality of losses associated with chronic illness is potentially enormous as the individual can feel stripped of many of the characteristics that form their identity while at the same time the illness has caused disability and loss of livelihood. One of the most crucial differences between loss associated with death and loss associated with chronic illness/injury, is that the losses are not tied to a single event but are multiple and repetitive- causing the ill person to live with perpetual grief. These concrete losses as well as the ensuing perpetual grief can greatly impact the individual’s family and relationships as well.  Romantic partners may become more like parents or nurses which can diminish the relationship but it can also cause resentment leading to irritability, frustration, and lack of communication. Or for the individual without a romantic partner, there can be an overwhelming sense of isolation as they are no longer able to socialize and participate in life activities the way that they once did.

As we mentioned earlier, although incredibly painful in its own distinct way, grief that is tied to a death can be time-limited in nature. There is a sense of finality which is excruciating in its own right but the finality can bring resolution and closure. There is a grieving process that often leads individuals to some form of resolution along with a sense of healing that enables the person to experience the loss not as acutely as they had before. According to Kate Jackson, LCSW, “For people who are chronically ill, the losses are multiple and permanent and therefore difficult to resolve. Because these losses are unending, they’re known as infinite losses.”

How can social workers help make a difference for you if you find yourself or a loved one living with chronic illness/injury? First and foremost, social workers need to be educated on the types of losses associated with chronic illness and understand the limitations of each illness. Here at Sharon Horn Consulting, we have vast experience with these issues. This puts us in a position to advocate and provide practical resources and referrals that can alleviate suffering.

Since this form of grief and loss is often a hidden problem, social workers initially can help just by being aware of the problem and alerting an individual’s physician, and family to signs that the individual is suffering with loss and grief associated with their illness. As social workers we can provide interventions such as organizing a targeted psychoeducational support group for the specific illness or providing individual, family, and couples counseling that focuses on the grief and loss from the chronic illness.  Within this population it is important that social workers use a strength-based perspective to help individuals focus on what they can do and find new interest, new structures, and new routines. Here at Sharon Horn Consulting we are very experienced in working with this perspective, and we can help individuals uncover new coping skills and outlets for their feelings. This does not mean that we will be telling individuals how lucky they are or that things can be better, but rather that they are still valuable, they still have something to contribute, and can still be active participants in their lives. The goal of our work as social workers in this population, is to not to give false hope but rather to redefine hope. As Ms. Jackson states in her article, “the goal isn’t only to listen to the patient and help him or her learn to accept losses and limitations but also to help him or her transform the experience into something livable and bearable. The soldier who lost a leg may be helped to accept a prosthesis and become instrumental in helping other soldiers cope with their injuries. The dancer who, as a result of injury will never dance again, may uncover a long-repressed desire to be a writer. The focus can’t be on what was, but on what can still be.” At Sharon Horn Consulting, it is our privilege and honor to stand beside you along this journey and redefine what hope means.

 

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