Rounded Apathy
Longing to return to stardust
- Aug 8, 2022
- 772
I came across this article as part of a long and beautiful post about coming to terms with the reality of ending one's own life from, a user who I don't believe is around anymore whose name I can't recall; I commented on the thread so if you rife through my history, it'll be in there somewhere...but that'd be a lot of work. Anyway, I thought the article nicely elucidated some things that I have felt and half-thought; it was nice to see it in another's writing, and could be useful for reflection (especially if you're new to this fun game), or sharing with others in your life who see you struggle. It's written for social workers so I've selected what I personally found to be key sections, but there might be parts in the full text that apply more to you than me. Here's hoping this helps anyone.
Imagine a person with a chronic illness as forever walking down a dividing line between the past and the future. Looking backward, he can see everything illness has taken from him or has forced him to relinquish. Looking forward, he can't see anything quite clearly. There's no going back to the past, and the future is uncertain.
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 and most obvious—the loss of good health and robustness—kick-starts a cascade of other forfeitures called network losses, explains Mila Tecala, LICSW, of the Center for Loss and Grief in Washington, DC. 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. In the most extreme cases, one illness may bring about all of these losses, sometimes over and over again in many ways.
Although the losses may be vast, the grief they arouse likely will go unrecognized or unaddressed—oversights that can have severe consequences.
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The loss of function, aggravated by the loss of status or identity, may diminish self-esteem and fracture body image, which in turn fuels anxiety and depression. Because chronic illness can strip away many of the characteristics that form identity at the same time it causes disability and loss of livelihood, the totality of the losses is potentially enormous. Since these losses aren't tied to one event but are multiple and repetitive, the ill person may live with perpetual grief, known as chronic sorrow or sadness. The most prominent component is fear, according to Tecala, who says the chronically ill may fear pain, disability, recurrence, and death.
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Most often, grief is a reaction to a single, time-limited event such as a death. According to Beth Kane, LCSW, a private practitioner in Toms River, NJ, who specializes in working with patients coping with illness, "Death is followed by a sense of finality, which is excruciatingly painful in its own right, but that finality can bring about resolution and closure." The bereft individual mourns the loss, often supported by friends and family who validate the experience of loss and help the bereaved move through and beyond grief.
Of course, acute and terminal illnesses also are accompanied by grief, but as with bereavement over the death of a loved one, the losses tend to be time limited. "An acute illness, while not pleasant, has an end," Kane notes. "There may be frustration and depression over what the experience is, and perhaps temporary loss, but there is a return to life as it once was." Even with terminal illness, although the thought of an end is painful, "there is an end. But with chronic illness, there is no end," she adds.
Under these circumstances, there's a grieving process "that most often eventually leads to resolution or closure along with the healing that provides the person the ability to experience the pain differently, not as acutely," Kane explains. Grief associated with chronic illness, however, is more complex for many individuals, she notes. 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, according to Tecala. "They can affect individuals' quality of life forever," Sloan adds.
Resolution of this grief can be elusive, as the individual has daily reminders of what was lost, according to Kane. They exist in a constant and unrelenting state of grieving over and over again.
And in cases of illnesses such as multiple sclerosis, a complex neurological disease characterized by periods of relapse and remission or progressive symptoms, or Parkinson's disease, which also may have an uncertain course, patients must live a lifetime of uncertainty, anticipating what may or may not come next, which Tecala calls the limbo state loss. "Most people don't handle the limbo state loss well for a long time or it becomes paralyzing," she says.
A patient with multiple sclerosis, for example, may deny the illness when the first attack resolves, with the diagnosis really sinking in after the second attack, Fine explains. A person with chronic illness ultimately realizes that the effects of the illness will come and go or will be relentless. "They may figure out how to compensate and move on despite the new limitations from the illness, but then another limitation may appear just as soon as they've mastered the other limitations," Sloan says.
They realize that they're going to live on a roller coaster of emotion. "They understand this is real, and it's going to happen more than once, and so the grieving process is dragged out and it becomes complicated," Fine says. It's hard for people to reach a place of acceptance because they don't always have a chance to finish the grieving process, she adds.
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In the current structure of health care, the provider must address physical issues and may not recognize or be capable of distinguishing the signs of grief or, Kane says, they may recognize the sadness, depression, and guilt but not know how to help. Most often, health care providers are focused on the treatment or the cure, according to Tecala. "That's the goal, and it's a noble idea, but there comes a time when a cure is not possible," she says. Physicians and social workers then need to set more realistic goals for the patient to be able to function as well as possible and to prolong his or her quality of life.
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Well-meaning individuals, whether friends and family or health care providers, may compound the difficulty. Some, for example, may try to add a helpful perspective by saying, "It could be worse" or "You look fine,"—statements that invalidate a person's physical and emotional suffering. "The notion of 'it could be worse' translated into 'you could be dead' is a big roadblock," Kane says. "There is a lot of material out there about positive thinking, which in its own right has its own merits and can be useful. But when statements like this are made or not made but used as a viewpoint, it is very dismissive of the pain the person experiencing this type of grief is trying to manage. Everyone has a right to how they feel, and for these individuals, they could very easily answer, 'It could be better.' Maintaining a stance with someone that things could be worse is not only unhelpful but also minimizes and dismisses the person's right to have their feelings."
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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," Tecala explains. The soldier who lost a leg, for example, 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.
As one of Tecala's patients told her, "You've helped me not to curse the storm but instead to learn to dance in the rain."
