by Cynthia Perkins, M.Ed.
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's a large variety of potential life interruptions and psychological changes one will go through when dealing with 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:
-Establish a good relationship with a supportive health care provider. -Allow yourself to feel and express your feelings.
-Allow yourself to grieve for what you have lost.
-Find support such as a support group, friends, counselor, etc. -Recognize the limits in your life and set reasonable goals. Be realistic about what to expect from yourself.
-Learn to adapt, make substitutions and modifications so that you can still participate in fulfilling life activities. Do something fun!
-Keep communication open with partners, friends and family members so that feelings and resentments don’t build up and so everyone’s needs can be addressed and met in the best way possible.
-Learn to value your own company, become your own best friend and find your self worth based on inner strengths rather than on what you do. -Take care of your body by following a healthy diet, mild exercise, and appropriate rest. Listen to your body. It will tell you what it needs. Pamper and nurture yourself with things that are enjoyable for you. -Educate yourself as much as possible about your condition and take an active role in your treatment. This will help regain a sense of control and improve your self-esteem.
-Let go of expectations of others and society. Understand that societies definition of what’s “normal” no longer applies. Do what you need to do for yourself.
-Make peace with your illness. Try to think of your illness and your pain as your companion instead of your enemy. Listen to the wisdom and lessons it may carry for you. Learn to flow with and accept your illness rather than resisting it.
Some strategies that have been helpful for others in coping: Mental Renovations, Companionate Activity Modification and Network Remodeling.
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 Chronic Illness is not easy. It is a lifelong process that will require ongoing adjustment and readjustment 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 when your symptoms exacerbate 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.