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Coping with the Loss and Grief Associated with Chronic Illness

By Cynthia Perkins

Living with a chronic illness has a profound impact on one's life and creates a lot of grief in response to the losses it imposes on our lives.

Living with a chronic illness has a profound impact on one's life and creates a lot of grief in response to the losses it imposes on our lives.  There are wide arrays of potential life interruptions and psychological changes one will go through when dealing with their illness. Our illness is erratic and unpredictable and requires constant readjusting. We are likely to endure multiple losses that may include the loss of control and personal power, which is an important contributor to self-esteem, as well as loss of independence, loss of identity, loss of financial status and loss of one's customary lifestyle. In addition to these we may also have to face the possible relinquishing of our hopes and dreams and face the fear of more on going losses. Changing roles in family, work and social situations that result from a person's illness also can create additional adjustment problems for everyone involved. Family members and partners are likely to be experiencing the same feelings as we are as well as their own feelings as to how the illness is impacting their life. If these issues are not worked out, then relationships may all apart and leave us with another loss.

Perhaps the most difficult of these transitions is the loss of the identity one held before becoming sick. Often, there is a complete restructuring of the way one defines oneself and the ways in which one interacts with the world. Sometimes it is difficult to feel good about oneself as our illness or disability is incorporated into a new self-image. The work of rebuilding one's life and identity can be further complicated by the loss of spouses or partners or other supportive relationships that sometimes follow the onset of serious illness. And, as all persons who suffer with an invisible illness know, the lack of validation and support for our illness creates further grief and frustration. At a time when we most need compassion, love, understanding, sympathy and support we may be met with criticism, disbelief, and anger.

It is no wonder that many people facing these multiple losses and the grief that naturally ensues find themselves experiencing high levels of anger, fear, helplessness, hopelessness, resentment, depression and damaged self-esteem. Coping with all these issues can be very overwhelming. There are several things we can do to help get though these difficulties and to cope better:

Some strategies that have been helpful for others in coping:  Mental Renovations, Companionate Activity Modification and Network Remodeling. (Duck and Wood 1995) Mental Renovations consist of cognitive and emotional strategies used to change expectations of what is usually thought to be normal. An example of this would be (adjusting ones mind to think it's ok if you can't do something the normal way but you can find another way to do it that fits your needs.)

Companionate Activity modifications consist of making modifications that include activity adaptation and substitution and changes in timing, location, and intensity of companionate activities.  An example of this might be (you're physically unable to attend an outing with your child so you find another alternative activity of having quality time such as a dinner at home and reading together. Network remodeling consists of carefully allocating times and energy around your network.   Carefully ration your energy. Prioritize and make lists of what's important and what must be done and what can be put off for later.

Living with your Chronic Illness is not easy. It is a lifelong process that will require ongoing appraisal and reappraisal of every day and each situation. Understand and accept that it is the nature of your illness to be unpredictable, intrusive, interfering, and erratic.  Expect the unexpected and make adjustments accordingly.   As you are sure to go through periods of exacerbation of symptoms and periods of improvement it is natural for you to move back and forth in your level of acceptance and adjustment. Understand that acceptance and adjustment occur in ebbs and flows.

Cynthia Perkins, M.Ed., Holistic Health Consultant, Writer and Educator
Specializing in Life Management and Support for Living with Chronic Illness, Chronic Pain, or Disability and Sex and Sexuality


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