Navigating Through Life After Diagnosis

When diagnosed with a chronic illness, people react to the news in different ways. Life changes.

Understanding the psychology of this process will help you take back control of your new life.

The effects of diagnosis are far-reaching. Our relationships change. We may feel a burden to family members and friends as our illness creates adjustment problems for everyone involved. Keeping up with activities becomes difficult at best, so we may become isolated and depressed as we compare our life to the lives of others.

Chronic illness will influence relationships at home with spouses and children, as well as friendships. It will influence how one functions at work and relationships with coworkers. How it affects these relationships is determined in part by how one handles their illness. Some people will try to handle it alone, and isolate themselves, and some will ask for help, and fear becoming a burden. Some may bring it out into the open and face ridicule, some may keep it a secret out of fear.

There will be those lucky enough to have a supportive partner, and there will be relationships with spouses, family or friends that cannot handle the strain of illness.

 

Chronic illness is unpredictable and requires constant readjustment. One may suffer numerous losses, including the loss of control, loss of independence, loss of identity, and loss of financial status.

 

Most chronically ill people eventually view themselves as a failure. The feelings of failure come from many sources. Some patients may be responding poorly to treatments. They may think “I am not the person I used to be,” “I am worthless now;” “I am no help around the house,” “I can’t earn a living,” or “I can’t provide for my family.” These negative ideas affect men and women alike: men may be incapable of fulfilling the “provider” role to their family, while women may be incapable of performing traditional domestic duties in the home. In either case, the result is the same — self-doubt.

This loss of identity may be the most difficult of all transitions we make. Sometimes we must completely redefine ourselves and how we fit in this world.

Chronic illness is an emotionally as well as physically draining experience. It can do permanent harm by threatening a person’s sense of well-being, competence, feelings of productivity, and self esteem.

How people react to chronic illness depends on many conditions, such as the severity of the illness, how resilient the person is, and the support they have.

 

Illness is a process. You will grieve the loss of the “old you”. You will be angry, depressed, and fearful. It would be abnormal to deny that your health and your life had changed for the worse.

 

In 1969, Dr. Elisabeth Kubler-Ross described the five stages of grief in her book On Death and Dying. Since her book was published, Dr. Kubler-Ross’ work has been used to convey many situations of change people experience in their lives, including chronic illness. There is no set time limit for each stage, and everyone will move towards acceptance of their illness at their own pace. Some people may move through more than one stage at a time, or skip an entire stage. Recognizing the stages of this grieving process can help you move through them with more confidence. This, in turn, may help improve your outlook.

The first stage in acceptance is Denial. The patient may convince himself that the doctor is wrong, especially with an “invisible” illness that can not be proven by diagnostic testing. They may wonder if their symptoms are real or “all in their head”, especially if they have been told this previously. They may even refuse medication, because that would mean the illness is real.

The second stage is Anger. This is the “Why me?” phase. The person wonders how this can happen to them, and how can the rest of the world go on as if nothing had happened. Some people become stuck in this phase, and become bitter and resentful. They may even be rejected by family and friends due to their negativity, and normals not understanding why they can just not “snap out of it”.

The third stage is Bargaining. Many people try making deals with God or a higher power. They may think their illness is a punishment of some sort, and promise to be a better person, if only they would feel well again.

Depression is the fourth stage, and it is a very familiar one to everyone diagnosed with a chronic illness. After the anger and bargaining, one may be left with feelings of hopelessness and despair. They may feel like giving up on themselves, and life in general. It’s natural to feel this way, but important to recogonize if you are becoming stuck in this phase, and to seek professional help if you do.

The fifth and final stage is Acceptance. A chronic illness will not go away, but once you accept it as part of your reality, you learn that your best chance for the future is to understand your condition, and work with medical professionals to control it as much as possible. You accept your new limitations, but try to go on with your life in as normal fashion as possible. There is still much you can do for your comfort and well being. Your new life is different, but different does not necessarily mean worse.

 

To be psychologically well while physically sick, you must believe you have value as a human being. You must not let your illness define you. You must learn to adapt, and be creative in every choice you make. You must realize that your personal worth is more important than any physical limitations you may have.

 

Some tips to make your life a good life:

• Get good medical help. Find a doctor or team of doctor who believe in your illness and know how to treat it. It may take some time and trial and error, but it will be worth the effort.

• Grieve your losses. Feel your grief and anger, but don’t blame yourself for it, and don’t stay trapped in this phase. Take back control of your life in small steps. Each day choose one small goal that you can accomplish that will make you feel good about yourself.

• Try not to isolate yourself. Family, friends, church, support groups, or online groups, can all give you strength and support.

• Seek out counseling. When you suffer the intermittent depressions that are a natural part of chronic illness, don’t try to handle it alone. Find professional help.

• Learn to adapt. Make substitutions and modifications so that you can still participate as much as possible, but be aware of you limitations.

• Communicate. With partners, friends and family members so that feelings and resentments don’t build up and everyone’s needs can be met.

• Value yourself. Learn to base your self esteem on the person you are on the inside. There may be many things you no longer can do, but there are many more things you still can, and you have even more you have yet to learn

About the Author:

Faith Stone is a regular contributor to Fog Magazine. In spite of her fibromyalgia, her columns appear here twice a month.