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How to Live Well with Chronic Illness

by Richard Cheu(more info)

listed in mind matters, originally published in issue 208 - August 2013

An Important Message for the Chronically Ill: The Brain Leads, the Body Follows

Here you are, waiting for the doctor to come in with the test results and to tell you what it all means. There are several routes that could have brought you to this same moment and place in time. You’ve been bothered for some time with a medical problem that has eluded diagnosis. Or, a family member or friend has nagged you into finally having a doctor examine you for what is an obvious serious health problem to everyone else and which you have deliberately ignored. Or it was a sudden and critical incident that landed you in the hospital. As you wait, you’re already thinking about all the things that need to be done today after the meeting with the doctor. You just want the doctor to tell you want is wrong and give you a prescription to take care of the problem.

Finally, the doctor walks in and greets you. Something about the doctor’s demeanour tells that you’re not about to receive good news. And you’re right. You are told that you have an incurable, chronic condition or disease; something that you will have to live with for the rest of your life.

RICHARD BOOK COVER

The Impact of the Diagnosis

The impact of a chronic disease or condition diagnosis is like having a professional boxer punch you in the head. The mental disorientation is as terrible as the physical pain. The most common reaction to this unexpected and dire pronouncement is a flood of negative emotions that overwhelm the senses and mind and can include: fear, anxiety, despair, anger, and grief. Their appearance is detrimental to your health because each one induces stress. Individually or in unison, they can trigger a physiological reaction called the Fight or Flight Response. This ancient response to perceived danger increases the chance of survival in a life threatening situation by enhancing the body’s capability to identify and locate the enemy and either fight or flee. This reaction is also very physiologically stressful.   Under ordinary conditions, the Fight or Flight Response mechanisms are ‘turned off’ once the danger has passed and the body resumes it normal and less stressful activities.

In the case of a chronic illness diagnosis, the doctor’s focus is on treatment of the disease and not on the mental impact of the diagnosis. Consideration and treatment of the negative emotions is usually minimal, if at all. Most often, the patient has to deal with them as best as she/he can. If unresolved, these negative emotions will continually trigger the Fight or Flight Response and a sustained high level of stress that damages the immune system, the body’s primary line of defence against illness and disease, and can - in extreme situations - lead to death.

Negative Emotions Are a Normal Response to Mental or Physical Trauma

Traumatic events are not all equal in their impact on the mind and body. An accidental fall that results in a fractured ankle traumatizes the body and unleashes negative emotions that traumatize the mind. Ordinarily, the broken bones heal over a period of weeks and the initial wave negative emotions subside and eventually disappear.

Life-threatening events as experienced by military personnel engaged in combat or inadvertent participants in a terrorist incidents such as the attack on New York’s World Trade Center on 9/11, or the 7/7 bombing of London Underground trains and a double-decker bus in Tavistock Square, can unleash highly traumatic emotions that are long-lasting and deeply embedded in the mind. This happens irrespective of whether the participant also incurred physical trauma.

The mental trauma associated with a chronic illness diagnosis is different from the trauma of the two opposite situations described above; the broken ankle and the terrorist incident in several important ways.

  • The negative emotions of the diagnosis do not automatically disappear over time as in the healing of the ankle and return to a normal life style;
  • They are not as deeply embedded in the mind as with the combatant or terrorist incident survivor;
  • They can be reduced or eliminated if acted upon soon after the diagnosis;
  • Most importantly, the patient is responsible for getting rid of this excess emotional baggage.

Controlling Negative Emotions Improves Mental Outlook

If the negative emotions that arise from a chronic illness diagnosis are not dealt with quickly but allowed to fester, they can become stubbornly embedded in the mind as with combatants and terrorist attack survivors. Let’s look at how to control some of the more difficult bad feelings.

  • Fear can be controlled by letting go of it. This is one of the most powerful things you can do for yourself. When you let go of the fears that are connected with your chronic disease, you will toss away the heaviest pieces of excess baggage that you have been carrying and you will immediately receive enormous benefits from doing so. The first benefit is a sense of relief. The greater the fear the greater the emotional release. Once you have rid yourself of your most oppressive fears, you will feel free. For some people, the sense of freedom is so great that it approaches a feeling of elation.

    A second benefit of letting go of fear is your increased willingness to share what is really happening in your life with others. It is possible that you have hidden your fear behind a carefully created façade so that no one else can see it. But that means that no one can help you with the things that are troubling you. When you lower your façade and allow others to participate in your true feelings and the realities that you are facing, you open yourself up to the emotional and practical support that you need.

    Letting go of fear will significantly improve your health immediately and over the long term as well so that you are better able to deal with your illness. Another benefit will be a growing sense of calm as you realize that you have survived a threatening situation. As you work through your fears and release them, you will see the world in a more positive way. Opportunities that were not visible when your vision was darkened by fear now can be seen and available to you.

    Equally important for your future is the increased self-esteem that you will have. Letting go of fear is an enormous challenge for everyone. Yet once you have committed yourself to letting go of fear and take the first steps, each succeeding step becomes easier and before you know it, you are feeling lighter. Increased self-esteem gives you the physical and mental strength you need to take on other challenges associated with chronic illness.
  • Grief, that sense of loss, is associated with every significant change in your journey through life. Many people are surprised by the fact that even joyous changes that have been greatly anticipated also have a sense of some loss, grief, associated with them. The recent graduate college graduate now working full-time looks back and misses the freedom associated with college life. As they approach the altar, the bride and the groom both become acutely aware that their individualities will soon be merged - if the marriage is to succeed - into a shared existence.

The grief associated with chronic illness is deeper and more complex than the grief associated with the loss of a loved one because the one you are grieving for is yourself.  I use a method called S.A.R.A. to help patients understand their grieving process when they are diagnosed with a chronic illness. The stages of grieving under the S.A.R.A. model are:


1.         Shock
“I can’t believe it.”
“It’s not possible.”

2.         Anger
“Why me? I live a healthy life.”
“Life isn’t fair.”

3.         Resistance (Denial)
“The doctors are wrong. I can beat this disease.”
“I don’t want to talk about it.”
“There has to be a cure somewhere.”

4.         Acceptance
“This is what I have to live with, so I will just make the best of it.”
“I’m taking life one day at a time.”
“Here’s how I am going to live my life.” 

Your Goal: The Acceptance Stage

The above stages, especially the first three, are very difficult for both the patient and caregivers. Shock, anger, and resistance can interfere with your doctors’ efforts to treat your illness and with your family’s efforts to care for you. The grieving process will help you heal emotionally so you can come to terms with your illness as soon as possible.

The purpose of the grieving process is to lessen your pain over time. Although we instinctively resist pain, you need to pass through the painful stages of Shock, Anger, and Resistance in order to arrive at the more peaceful stage of Acceptance. Your grief may never subside completely if your chronic illness has caused large losses, but if you will allow the process to take its course, your grief will gradually feel less intense and you will be able to function. You may even find that there is space in your life for happiness again.

  • Anger

    Does your chronic illness sometimes make you angry? Many people come to deeply resent the limitations imposed by their illness - you can no longer do all that you used to do. Moments of annoyance, irritation, and even anger can accompany the many issues that arise with chronic illness. Perhaps it’s trying to keep track of the endless number of appointments with different doctors and therapists. Or it might be your frustration with arriving on time for an appointment and then having to wait half an hour without any explanation for the delay. Chronic pain can turn a previously easy-going personality into an irritated and constantly complaining grouch.

    Anger is a natural defence mechanism that is a part of the Fight-or-Flight Response. Eons ago, the purpose of this response was to protect us against attacks from predators or other sources of physical harm. In modern life, however, humans have adapted the Fight-or-Flight Response to include perceived or actual psychological and physical threats.

The Dimensions of Anger

Anger has three basic dimensions: frequency, intensity, and memories of past events. When the nurse or doctor wants to know how much pain you’re experiencing, you will be asked, “On a scale of 1 to 10, where 10 is the worst pain you’ve ever experienced, how much pain are you feeling now?” You can rate the intensity of your anger in the same way. You can be slightly angry (annoyed), somewhat angry (irritated), seething mad (really angry), or somewhere in between any of these points. Anger is like the temperature of running water: cool, tepid, warm, hot, or boiling.

Answering the following questions will help you understand your anger temperament and whether or not you need to adjust how you react to events and people.

  • How often do you get angry? Infrequently, occasionally, frequently, or daily?
  • When you get angry, are you usually annoyed, irritated, or really mad?
  • Is there some specific situation or person that makes you intensely angry?

How big is the box of anger that you carry around with you, ready to respond to situations that irritate you? If it is out of proportion to events or is causing you problems, you need to make it smaller. It may be helpful for you to know that it is possible to change your response to the things that aggravate and frustrate you, to reduce the frequency and intensity of your anger episodes.

Controlling Anger Is Essential for Your Health

Chronic, intense anger is a very toxic emotion that can directly cause illnesses like heart disease and possibly even cancer. It is believed to impact the body right down to the cellular level. Anger poisons the mind and body. It sets up an overall negative physical and mental disposition that is not conducive to health or happiness. Short-term anger is like a food or wine stain on your clothing: the sooner you act to remove it from the fabric of your life, the easier it is to get rid of it. The longer you allow it to remain, the more stubborn and resistant it becomes to removal. Listed below are several ‘stain removers’ that can be quite successful in helping you get rid of short-term anger. Which one is best for you will depend on the situation, your personality, and - most important of all - your desire to rid yourself of anger.

  • Live in the present;
  • Learn to forgive;
  • Laughter;
  • Change your view of life.

Using Positive Psychology to See New Opportunities

Positive psychology is a new branch of psychology. The purpose of this new scientific field of research is to examine the experiences and the personal, institutional, and cultural qualities that can assist anyone to achieve a life worth living. It has important implications for you and all chronically ill patients: specifically, you already possess personal strengths that you can use to overcome the limitations of your illness in order to achieve a meaningful and fulfilling life. Furthermore, your strengths can be used to overcome weaknesses in your personality.

One of the first goals of positive psychology researchers was to search for, identify, and classify positive human characteristics. The researchers examined the teachings of major philosophies and religions extending thousands of years back, including Aristotle, Plato, Buddha, and many more important contributors to the understanding of human nature and thought from both Eastern and Western civilizations. They found that there are six virtues that are common to nearly every one of the traditions they examined. Furthermore, their research revealed that twenty-four specific human types of strength, which they called Values in Action, can be used by anyone to develop the six virtues.

If you believe in your self-worth and are willing to work your way forward, one step at a time, toward a better future, you can achieve it. Don’t allow yourself to fall into negativity or self-pity. You can create a new and positive perspective for your future life using the following steps:

  1. Put yourself in a positive environment. Keep your home and workplace brightly lit with low energy light bulbs;
  2. Surround yourself with positive-thinking people. Happy people attract other happy people. Participate in organizations that support your positive qualities. Community is important because members can be supportive of your efforts and offer helpful suggestions and insights you might not have thought of. Most importantly, you are not alone your endeavours;
  3. Feed your optimism by identifying and developing your personal strengths;
  4. Visualize a new perspective for yourself and your life. Visualization involves forming strong mental images of things you want, so that they become installed in your mind and you’re more likely to take action to make them happen. Begin with the broadest aspects and get a general idea of the new things you want to do. Then fill in the details as they become clearer to you. Don’t be afraid to change one or all aspects. Play with your vision until you’re satisfied with it;
  5. Live your new perspective. Implement your vision for your life a little at a time until you are comfortable with your new perspective and your new life experiences.

It’s Your Choice

If you want to achieve the things we’ve been discussing, you have to answer just one question: Do you want to be as healthy as possible? If you said “Yes”, you have taken the first step to better mental, physical and spiritual health. And, you will discover that others are waiting to help you on your journey.

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About Richard Cheu

Richard Cheu BA MA MBA is the author of Living Well with Chronic Illness: a Practical and Spiritual Guide, a stress-management consultant and an ordained Catholic deacon serving in the Archdiocese of New York. He is a hospital chaplain and provides pastoral counseling to patients at Bellevue Hospital and other medical facilities in New York City. Prior to ordination, he was a neurophysiologist (teaching medical and nursing students) and an Emergency Medical Technician. He is currently in his 10th year as caregiver to his chronically ill wife. They live in New York City. He may be contacted via www.ChronicLivingWell.com   www.facebook.com/ChronicIllnessAPracticalSpiritualGuide    https://twitter.com/RichardACheu

 

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