Alpha-1 Advocacy Alliance - Emotional Support

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Denial

Denial: all of us, at some time, possess this emotion especially when it pertains to our most valuable possession, our health. Many people tend to "deny" an attempt to go on and "live their lives", but soon find that their body is in control.

Denial is psychological coping strategy. It appears that certain types of denial might be beneficial, while others might be very harmful. Denial is a complex phenomenon. The basic defense mechanism of denial does not distinguish between the dangerous and harmless forms.

Traditionally, those who experience a serious illness approach denial in one of two ways:

(1) a gloomy perspective of resignation, self-denial, and helplessness, and/or
(2) a Pollyanna approach that denies altogether that there has been a real damage.

Both of these perspectives distort and disguise the reality of chronic illness.
The first perspective views the chronically ill person as a failure. This patient does not respond to the miracles available by modern medicine, and somehow the lack of recovery is the patient's fault.

This attitude of blame accounts for some of the worst psychological abuses of patients by health practitioners and caretakers, an attitude typified by the too-frequently heard statement, "Stop complaining. All the anger and blame inherent in this attitude is misdirected: the patient rather than the disease becomes the target.

The Pollyanna approach is typified by personal stories of complete recovery from extreme illness or disabling conditions.

These stories tug at the heartstrings and catch the fancy of all who read them. Creating false hope by overplaying the likelihood of complete recovery, these stories consistently underplay the sadness and feelings of loss, that are a part of the legacy of any physical or emotional trauma.

Sometimes, it is useful in social situations to present yourself as a Pollyanna. It may be an advantage for you to let others think you have mastered your disease. The anxiety of other people reduces by not having to confront illness. The danger is that this Pollyanna image may create a barrier between you and the people who can offer real help.

To be psychologically well while physically sick involves the belief that your personal worth transcends physical limitations; you need positive self-esteem for true adjustment. This belief in your self-worth rarely emerges until you have grieved what you have lost.

Each stage in the progress involves loss, grief, and acknowledgment of internal pain. Illness is an emotionally as well as physically depriving experience. It can do lasting harm by threatening a person's sense of well-being, competence, and feelings of productivity. Emotional reactions to chronic illness may culminate in the feeling that life has no meaning.

Illness is a process. How people react to chronic illness depends on many conditions.

The first is the severity of the illness. The very sick must put all their energy into healing and may not have the luxury of energy left over for emotional growth.

The second is the social support available. If you are willing to ask for help and you have a wide support network, you will have an easier time than if you are isolated.

The third condition is the personality of the person. If you have always been pretty, resilient, you are likely to have resilience in coping with the illness.

The chronically ill person not only suffers the loss of capacity, but also feels deprived of future ability. In the face of such losses, to experience fear, anger, depression, and anxiety are normal. It would be abnormal to deny that your health and your life had changed for the worse.

Serious emotional difficulties are more often the lot of people who do not acknowledge the emotional stress they feel and thereby bottle up depression or anxiety until these feelings are so powerful they break through their defenses.

Once diagnosed with Alpha-1, here are some of my recommendations.

Start, as soon as you can, to get your life in order (i.e., your family, job, and business).

Accept the changing roles with your spouse or partner.

Begin to prepare for the future and ask yourself, "What will I do as the disease progresses?"

Do not waste time! Time becomes very precious when you have Alpha 1. Do not regret the first few years in denial and self-pity.

Learn all you can about the disease and do not be afraid to learn the truth. Knowledge is power! It helps alleviate your fears and can help you make better-informed medical decisions.

Choose a Alpha-1 Specialist that is right for you! One you can talk to, who knows about Alpha 1 and who knows how to adjust your medications for the best results long term.

Stay at your job for as long as you can. If you need to retire, get your traveling in early because you never know how you will be feeling in a year from now.

Live as normally as you can. Maintain your social life and cultivate new friendships as well. Friends can be very helpful, learn to accept their help graciously.

Remain productive and try to contribute to society.

Avoid stress, it only makes you feel worse and can aggravate your condition.

Join an Alpha 1 liver/lung support group, or liver/lung transplant group to learn how others cope with Alpha 1 (Don't avoid support groups because you feel you are not as bad off as the others).

Create a new life for yourself and your family!

Keep a positive attitude and never give up hope!

Disclaimer: The information presented on Ask Pat is not intended to be a substitute for professional medical advice or to replace your relationship with a physician. For all medical concerns, you should always consult your doctor.

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