Psychologically speaking

Coming to terms with your illness

Reprinted from Recovery, May 2004

By Terry Wolinsky McDonald, PhD
Clinical Psychologist
PPS Board of Directors

No one chooses chronic illness and/or pain. There are, however, choices you can make that can either empower you or allow you to be a victim of your misfortune. It is normal to ask why me? but there are no easy answers is not because you are a bad person and somehow need to be punished.

Sometimes things really do just happen, and in the case of certain diseases and disorders, some people may be genetically predisposed from birth. Scientists are continuing to study this connection, along with stress and other environmental factors.

After you are diagnosed you will feel emotionally different (e.g., anxiety, de-pression, anger, irritability, lack of energy, sleep and appetite changes.) Sometimes medications that are used to treat the disease magnify the above changes. It will be important for you to start to accept a certain amount of lack of control over aspects of your life which you previously took for granted. You will adapt by using more positive coping strategies.

First you will come to accept the things you can not control, since none of us has a crystal ball. The serenity prayer used by Alcoholics Anonymous and NarcAnon is often helpful here. The future is uncertain for everyone, but not the same as in this new way for you. Your primary support system may or may not be accessible for you in the way you need it.

How do you tell people who are not afflicted how you honestly feel? When someone says, You look really good today, you must be getting better, how do you respond?

Youll want to explain the disease and its unpredictability to them, but will they really get it? Will they be able to understand? Will they want to understand? Can they really handle the truth? If not, and you have not come to terms with the illness yourself, this will be a major problem for you.

My own standard response is thank you to a compliment and why dont we talk about how you are feeling? to How are you feeling? Okay, Im still alive and kicking may also be appropriate, depending on who is asking the question.

For most people it is just a greeting: Hi, how are you? They dont really want to know, so just take it as a greeting and dont feel obligated to educate them or to get things off your chest unless an exercise in futility and frustration is what you want to use your precious energy on. Some people rejoice in the opportunity to make it a production. That choice is yours.

Coming to terms with your illness does not mean you have to like it. It is acceptance, pure and simple. This does not make you a walking disease; you are a cognitive (thinking) human being who just happens to have this rare illness. You will continue to have feelings, and these feelings will get hurt. It is all part of being human.

How you choose to live affects the quality of your own life, of course, but it also affects the quality of life of those closest to you.

It is not always a matter of the glass being half empty or half full; sometimes it is just a glass with water in it. Some days are better than others, and none of us, even with the same disease, have identical symptoms or pain thresholds. Remember that changes can be threatening, or they can be viewed as challenges and opportunities.

Positive growth always come from working from your strengths. Identifying weaknesses and problem areas is important in creating goals, but you need to identify your strengths (including any support systems) in order to achieve those goals.

Your strengths (e.g., intelligence, persistence, etc.) will aid with coping with anxiety, mood changes, the symptoms of the illness and negative medication side effects.

With new coping skills, adaptations, and relaxation techniques (imagery, deep diaphragmmatic breathing, etc.) you can break the cycle of a downward spiral and adapt to the on-going and unpredictable changes you are facing in your life.

Some areas which may be affected include: Increased stress levels; concentration problems; decreased self-esteem, increased worry and high anxiety, and feeling isolated and misunderstood. Some people close to you may complain that you complain all the time, while you are thinking If they only knew the things I am keeping inside. . .

These are probably the things to talk to a professional about; psychologist, licensed therapist, counselor, spiritual counselor. As I have mentioned previously, there are always problems we feel we have put to rest long ago, but now they may be brought to the forefront.

In therapy (usually in conjunction with an antidepressant or a combination of antidepressants prescribed by a family doctor or psychiatrist) you can freely talk, vent, cry, ask questions, or otherwise express feelings in a non-judgmental and trusting environment with a professional who is listening to you!

You will learn to pace yourself; rational (versus emotional or distorted think-ing), how to live a proactive and fulfilling life, relaxation methods, and positive and personalized coping strategies.

Coming to terms with your illness wont happen overnight, but learning and using positive coping/relaxation techniques can be learned quickly and utilized often.

Coming to terms with the uncertainty of lifes changes brought on by chron-ic illness challenge you to be proactive and to use the cognitive skills all humans have.

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