Fall 1999 ~ Newsletter
Cystic Fibrosis and Depression
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Living And Thriving With A Critical Illness
- by Avi Madan-Swain, Ph.D. and Joseph Ackerson, Ph.D.
- UAB - Department of Pediatrics, Division of Pediatric Neurology
Life is complicated enough without having to deal with a chronic illness, particularly one such as CF that has a variable and uncertain course. As the individual diagnosed with CF grows and matures, their understanding of the disease and its impact on their life changes (e.g., for younger children it may just mean frequent stays in the hospital; teenagers deal with body image concerns, peer concerns and issues related to their mortality). Similarly, families have to learn to adjust and adapt, adjusting roles and rules and allow for more independence as their child develops.Coping refers to people's efforts to meet the challenge presented by stressful life events. There is much variability in the way individuals and families respond to this challenge. Parents have to realize that the limitations imposed by the illness need not wholly define their child's life or their role as a parent. Yet, it is a challenge to carry on a relatively normal life in the midst of dealing with such a chronic illness. Most parents and individuals diagnosed with CF meet this challenge by adopting a "take one day at a time" attitude in which they accept each day as it comes and refuse to plan (or worry) too far in advance.There are a number of other strategies that the parents and individuals diagnosed with CF may use when dealing with particularly stressful events. Denial is the use of beliefs and behaviors that do not focus upon the seriousness of your child's illness. By using this strategy parents may reduce the impact of CF on their lives, thereby permitting them to deal with other family issues. Parents who cope well tell us that they don't constantly think about the disease and need "time off." Denial of the possibility of another flare-ups as long as it does not interfere with treatment, may provide parents with energy to participate in other family related activities.Some family members use denial to ignore their fear of the unknown. Such an approach only serves to cover up the problem not eliminate it. But by acknowledging the fear you take the first step in coming to grips with it. After that you can plan a strategy for dealing with it. Some useful techniques to decrease your feeling about fear include use of relaxation procedures, visualization, short-term problem-focused cognitive behavioral therapy, and prayer. Others have gained a sense of control by setting goals for the future. There is no step-by-step recipe for eliminating fear, and only you will know what method works for you. To find an effective strategy you will need to take stock of your unique strengths and abilities and then draw on your own inner resources.
A coping style similar to denial is optimism. Regardless of the odds of survival, many parents report using optimism as a way of dealing with the stressful impact of the illness. Without hope parents tend to overprotect and overindulge their child to the point that child may feel his or her parents have given up. Parents who have a child diagnosed with CF you face an unknown medical future. Parents who feel that they dealt well with negative long-term prognosis state that they "deliberately developed more positive attitudes" by reminding themselves of continuing improvements in medication and treatment by taking pleasure in small victories.To live without hopes and aspirations isn't really living. It's merely existing. We need to be able to look beyond today and influence what happens tomorrow. Goals provide direction; they're stepping-stones to the future. Your goals don't have to be big to be effective. You may not have the physical energy to tackle major goals. Sometimes getting through the day is the only goal you can muster. Set reasonable short-term goals for yourself because it will give you a sense of moving ahead.
Another coping strategy some parents adopt is acceptance of their child's situation and their own stressful condition. The statement typifies it: "What will happen will happen. I can't do much about it! But I will survive it." This acceptance of the disease and its probable outcome is moderated by the courageous conviction that survival comes not by resistance or denial, but by acknowledging reality and getting on with the rest of one's life. Acceptance does not mean surrender. It does mean recognition that "although we can help, we cannot cure."
Closely related is the deliberate effort by parents to create or maintain an emotional balance, to attain inner peace and avoid extreme mood swings such as great optimism or greater depression. This strategy allows one to continue with life, fulfill work and family obligations and to care for the sick child. There are many specific techniques that can help parents keep an emotional balance but the most useful may be physical relaxation techniques such as exercise and meditation. Maintaining emotional balance does not exclude having and expressing strong feelings of anger and sadness but requires parents to develop and use effective and appropriate methods to manage these emotions.A number of parents cope by relying on their religious beliefs and practices. Many of us derive emotional comfort from our personal relationship with God. In addition to the assurance and comfort we experience through our faith, engaging in prayer and a deliberately spiritual lifestyle provides us with an inner peace, acceptance of our situation, opportunities for reflection, and eternal hope for the future which is difficult to match outside of a faith community. Religious beliefs may also provide answers to the difficult questions asked by parents and children as they try to make sense out of the illness and derive meaning from their lives.
Problem-solving is a helpful strategy and involves identifying and implementing a specific course of action to deal with stress (e.g., increasing work hours to raise money or rearranging schedules to be with your child in the hospital). When you're involved and busy you have less time to worry and feel you have an important and effective role to play.Adjusting to the compromises imposed by a chronic illness requires flexibility, perseverance and a dash of courage. When you encounter hurdles don't let them hang you up. Find a way over or around them. Different people use different strategies to cope. No single strategy appears to work well for everyone. You can either play the victim, which means you are going to let circumstances control your fate, or you can accept the fact that you, like anyone else, will have problems to contend with in life. You can work with these problems and whatever limitations they put on you and still do what you want with your life. As simple as it sounds it does help to focus on the good rather than the bad. Of course a positive attitude is not going to make all your problems vanish overnight but it will give you the energy and inspiration you need to work at solving them.
Finally, we all get stuck sometimes in our lives and asking for help is NOT a sign of weakness. A variety of people including extended family members, family friends, peers, ministers or priests, social workers and counselors are available to assist you. If you find that your problems are not getting better and are interfering with your ability to deal with daily activities it will be helpful to see a Pediatric Psychologist or a Psychiatrist for short-term problem-focused therapy. Pediatric Psychologists and Psychiatrists, because of their training, are particularly well suited to helping individuals and families accept and deal adaptively with their medical diagnosis and get back into the mainstream of life.