Living with a Chronic Illness

Dealing with Feelings

Learning that you have a chronic illness can bring up many different feelings. If you are going to live a rich and full life, you will have to learn to Master it.

It can be a shock to learn you have a chronic illness. You may ask "why me?" or "where did it come from?" The fact is, it doesn’t matter other than to quench your curiosity. You have it and there may be no reason at all. The focus now should be how to best manage the illness. Imagine finding yourself navigating the unpredictable reality of chronic disease, the term used to describe any long-term illness that can last or recur over a lifetime.

Such conditions affect tens of millions of Americans, mothers and fathers, even young children, and include diagnoses like MS and other autoimmune dis-eases, as well as diabetes, asthma, and depression. Because of treatment breakthroughs and the likelihood of recurrences, cancer is also often considered a chronic illness, not just a terminal one. Even on the days and weeks that these patients are symptom-free, they live with the threat of flare-ups, as well as the worry of how they will care for themselves and their families when their lives are interrupted by the demands of their illness.

Sometimes nothing can explain why you got the illness. I have Fibromyalgia. No one knows what causes it. We know that a large percentage of patients suffered from childhood abuse. It’s about 80% as a matter of fact. The illness may run in your family. I discovered just before she died that my mother also had it. She and I were both pretty severely abused growing up and in our young adulthood. But that doesn’t explain the 20% who suffered no known abuse. Why do they have it?

You may have been exposed to something that caused the illness. Strokes, lung cancer, depression, type 2 diabetes, COPD, chronic kidney disease, several cancers, hepatitis and others are all caused by exposure to environmental substances, food and food additives, plus poisons that we voluntarily expose ourselves to such as cigarettes and alcohol and drugs.

With your doctor’s help, learn everything you can about your illness. As you learn more about your illness and how to take care of yourself, your feelings may change. Fear or shock may give way to anger because you have the illness, sadness or depression because you may not be able to live the way you used to, and confusion or stress about how to take care of yourself.

For many, the first hurdle is revising their expectations of family life. "Of course, you can still be a loving family, but some adjustments will have to be made," says Elvira Aletta, Ph.D., a psychotherapist in Amherst, New York, and mother of two who has been diagnosed with scleroderma, a chronic auto-immune illness. "Your family life will not look the way you imagined it would. That's a loss, and it hurts a lot."

Your Image of Yourself May Change

You may feel like you are not a whole person anymore. You might be embarrassed or ashamed that you have an illness. Know that, with time, your illness will become part of you and you will have a new normal. You will learn to live with your illness. You will get used to your new normal. For example:

  • A person with diabetes may need to learn to test their blood sugar and give insulin several times a day. This becomes their new normal.
  • A person with asthma may need to carry an inhaler and avoid things that may cause an asthma attack. This is their new normal.

You may become overwhelmed sooner or later by:

  • How much there is to learn
  • What lifestyle changes you need to make. For example, you may be trying to change your diet, quit smoking, and exercise.

A chronic illness can even change your plans about having children. With Diabetes, Fibromyalgia, Chronic Depression and an anxiety disorder, I was always waiting for a better time. Then when one finally came, I was in a car accident and there would have been days that I couldn’t lift my baby. Then, at 63, I had to have a radical hysterectomy because endometrial cancer. That dream is over for me. I still think of adopting an older child.

Besides such big-picture adjustments, there are day-to-day shifts. Constantly recalibrating is really important. Maybe your shoulder pain is so severe that you can't pick up your child today, or your energy level makes even the simplest games impossible. You have to be much more adaptive.

Easier said than done, of course. "That cycle of good and bad days is the most frustrating thing about having a chronic illness," says Maureen Yacobucci, 34, who lives in Arlington, Virginia. She was diagnosed with the autoimmune disease lupus six years ago, and has a 5-year-old daughter, Margaret. "You have a few good days and get a lot done. Then you have a bad day, where even making dinner can seem like a lot. During those times I don't have the energy to play with Margaret as much as I'd like to. It's hard."

Fighting fatigue is another challenge. "My blood sugar is harder to control if I'm not getting enough sleep," says Morgan. "And between work and chasing a toddler, I have all the same struggles with sleep and stress as other mothers -- it's just that with diabetes, the consequences are very different. I won't only get grouchy, I'll get very, very sick. Last winter, I had bronchitis five times. Managing diabetes takes work, and if you're not feeling well, it's hard to do it right. I'm learning to put my own needs ahead of my child and my husband, but it isn't easy."

Be Gentle with Yourself

Know that you will adapt over time. You will feel like yourself again as you learn how to fit your illness into your life. Know that what may be confusing at first starts to make sense. Give yourself time to learn how to take care of your illness.

Be aware that it takes a lot of energy to manage a chronic illness every day especially if there is pain involved. Pain in an energy vampire. Sometimes this can affect your outlook and mood. Often you will feel very alone. This can be true even in the middle of a crowd. This is especially true during times when your illness is harder to manage.

There will be times when you feel some of the feelings you had when you first got the illness. Depression that you have the illness to start with. It can feel like life will never be okay again.

Sometimes you will feel angry. It still seems unfair that you have the illness. Would it be fairer if someone you know had it? Of course not! Life just isn’t fair. You may cycle back through anger, especially if there is something you want to do that in the past you would have been able to do – but no more.

Fear is a real threat. You may become more ill over time. You may run across someone who has the same illness much worse that you do and fear that one day you’ll be where they are. Or perhaps you will see someone who has a very mild case of the same disease and you’re wondering why you had to be the one to get it bad.

Know that your range of feelings is normal. Stress can make it harder for you to take care of your chronic illness. You can learn to cope with stress to help you manage day to day.

Find ways to decrease stress that work for you and that you may even enjoy. Here are some ideas:

  • Go for a walk.
  • Read a book or watch a movie.
  • Try yoga, tai chi, or meditation.
  • Take an art class, play an instrument, or listen to music.
  • Call or spend time with a friend.

Finding healthy, fun ways to cope with stress helps many people. If your stress lasts, talking with a therapist might help you deal with the many feelings that come up. Ask your health care provider for help finding a therapist.

Enlist the Right Support Team

I read about a man named Bruce Feiler, of New York City, who learned that he had a seven-inch cancerous tumor in his leg, he immediately thought of his twin daughters, who were 3 at the time. "If I die, will they wonder who I was? Will they yearn for my voice? I thought about the things I'd miss -- the boyfriends I might not be able to scowl at, the art projects I wouldn't get to hang on the wall," he says.

Soon after, the idea came to him to ask some of his favorite men to form a group called the Council of Dads to help look after his daughters. One was designated to teach the girls the joys of travel as they grew up, for example, another to teach them all about nature. "Not only did it reassure me that my daughters might know what I might have taught them, but it gave me a wonderful chance to talk to these men and tell them what they meant to me, and ask for help," says Feiler, 45, who has been cancer-free since 2008 and recently chronicled his experience in The Council of Dads: My Daughters, My Illness, and the Men Who Could Be Me. He recommends other families consider a similar approach, even if they aren't facing a life-threatening illness. "It helps families re-create a sense of extended family, and builds a bridge between relatives and friends, right when you need it most."

For many people, disease-specific support groups can be very beneficial and are often the only outlet where they can discuss their condition freely. One woman, for example, says an MS group was extremely helpful in the early days, providing perspective and even a dose of gratitude. "My injections cost $2,000 a month," she says. "I met women in the group who couldn't afford medication, and I realized that we're so lucky to have an insurance plan that covers it."

It's also vital to talk about your feelings with a mental-health provider who has expertise in helping people with chronic illnesses, since depression -- a recurring illness itself -- is one of the most common complications of chronic disease. Experts believe that as many as 35 percent of those who are chronically ill develop depression too. Diagnosing and treating that depression can be tricky, since so often the symptoms, like fatigue and changes in appetite, are similar to problems of the first illness, or even to the side effects of the drugs used to treat them.

Mindful Meditation

Meditation practice can positively influence the experience of chronic illness and can serve as a primary, secondary, and/or tertiary prevention strategy. Health professionals demonstrate commitment to holistic practice by asking patients about use of meditation, and can encourage this self-care activity. Simple techniques for mindfulness can be taught in the clinical setting. Living mindfully with chronic illness is a fruitful area for research, and it can be predicted that evidence will grow to support the role of consciousness in the human experience of disease.

Dr. Melania Lizano reports that patients understand when she recommends meditation to control stress in their lives, even when she prescribes it for anxiety or depression. But when I suggest that my patients learn to meditate to help them lose weight, change bad habits, or deal with disease, they seem surprised. They always ask how meditation could possibly help them deal with things like fibromyalgia, migraines, or chemo treatments, and they surely doubt it could help them control their weight. But it does!

Although meditation originated as a spiritual practice, with origins dating back thousands of years, its popularity in the West is based on its powerful ability to control stress. What they don’t realize is that stress and anxiety are common causes of illness and can lead to chronic disease.

Meditation is the antidote. By reducing the production of stress hormones, it counteracts all the stress-related changes in the body, giving a boost to the immune system and helping to prevent and manage chronic disease. It also helps prevent and treat cardiovascular disease and can even reduce cholesterol and blood sugar levels.

Stress is the way you respond when your needs or desires are not met. People under stress react with the fight or flight response. This is an ancient response based on fear, which prepares the body for potential danger. Stress affects the entire system and is produced in seconds; it increases blood pressure, heart rate, and respiratory frequency. Basically, every cell in the body reacts to the increase in stress hormones that accompanies the fight or flight response, even if you’re not in real danger.

These changes in your physiology—when experienced on a daily basis—can affect your health because they act as seeds for disease. The constant fight or flight state has been associated with hypertension, heart disease, diabetes, obesity, stroke, digestive problems, and in the long term, immune problems and chronic diseases such as cancer.

Meditation allows you to respond to stress instead of reacting to it. During meditation, you experience a profound sense of peace and relaxation that can dissolve the physiologic changes produced by stress. It can decrease blood pressure and heart rate, and it can lower anxiety and depression, which are the typical stress markers.

The benefits of meditation persist throughout the day, too. It helps you experience more peace and clarity in your life and this allows you to react differently to stress, breaking old habits and response patterns.

Kabat ZinnJon Kabat-Zinn, Ph.D. is internationally known for his work as a scientist, writer, and meditation teacher engaged in bringing mindfulness into the mainstream of medicine and society. He is Professor of Medicine emeritus at the University of Massachusetts Medical School, where he founded its world-renowned Mindfulness-Based Stress Reduction Clinic (in 1979), and the Center for Mindfulness in Medicine, Health Care, and Society (in 1995).  He is the author of two best-selling books: Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain and Illness 

Dr. Kabat-Zinn received his Ph.D. in molecular biology from MIT in 1971 with the Nobel Laureate in physiology and medicine, Salvador Luria. Dr. Kabat-Zinn's research between 1979 and 2002 focused on mind/body interactions for healing, on various clinical applications of mindfulness meditation training for people with chronic pain and/or stress-related disorders, on the effects of mindfulness-based stress reduction (MBSR) on the brain and how it processes emotions, particularly under stress, and on the immune system; on the use and effects of MBSR with women with breast cancer and men with prostate cancer; on patients undergoing bone marrow transplant; with prison inmates and staff (view PDF); in multicultural settings; and on stress in various corporate settings and work environments.

His work in the stress reduction clinic was featured in Bill Moyers' PBS Special, Healing and the Mind and in the book of the same title. In 1998, he and his colleagues published a research paper demonstrating in a small clinical trial, a four-fold effect of the mind on the rate of skin clearing in patients with psoriasis undergoing ultraviolet light therapy: [Kabat-Zinn et al, Psychosomatic Medicine 60:625-623 (1998)] (view PDF). Another study [Davidson, Kabat-Zinn, et al. (2003)], showed positive changes in brain activity associated with more effective emotional processing under stress, and in immune function in people taking an MBSR course in a corporate work setting in a randomized clinical trial ( view PDF). In 2008, he published, with Dr. David S. Ludwig of Children's Hospital, an article in JAMA (Journal of the American Medical Association) called Mindfulness in Medicine.

Dr. Jon Kabat-Zinn developed the Mindfulness Based Stress Reduction (MBSR) program at the University of Massachusetts Medical Center. Since its inception, MBSR has evolved into a common form of complementary medicine addressing a variety of health problems. The National Institutes of Health's National Center for Complementary and Alternative Medicine has provided a number of grants to research the efficacy of the MBSR program in promoting healing (see "Studies" below for information on this research). Completed studies have found that pain-related drug utilization was decreased, and activity levels and feelings of self-esteem increased, for a majority of participants. More information on these studies can be found on the University of Massachusetts Medical School website: Center for Mindfulness

Mindfulness Based Stress Reduction brings together mindfulness meditation and yoga. Although MBSR is a training with potential benefits for all types of participants, historically, students have suffered from a wide range of chronic disorders and diseases. MBSR is an 8-week intensive training in mindfulness meditation, based on ancient healing practices, which meets on a weekly basis. Mindfulness practice is ideal for cultivating greater awareness of the unity of mind and body, as well as of the ways the unconscious thoughts, feelings, and behaviors can undermine emotional, physical, and spiritual health.

The mind is known to be a factor in stress and stress-related disorders, and meditation has been shown to positively effect a range of autonomic physiological processes, such as lowering blood pressure and reducing overall arousal and emotional reactivity. In addition to mindfulness practices, MBSR uses yoga to help reverse the prevalence of disuse atrophy from our culture's largely sedentary lifestyle, especially for those with pain and chronic illnesses. The program brings meditation and yoga together so that the virtues of both can be experienced simultaneously .

The MBSR program started in the Stress Reduction Clinic at the University of Massachusetts Medical Center in 1979 and is now offered in over 200 medical centers, hospitals, and clinics around the world, including some of the leading integrative medical centers such as the Scripps Center for Integrative Medicine, the Duke Center for Integrative Medicine, and the Jefferson-Myrna Brind Center for Integrative Medicine. Many of the MBSR classes are taught by physicians, nurses, social workers, and psychologists, as well as other health professionals who are seeking to reclaim and deepen some of the sacred reciprocity inherent in the doctor-caregiver/patient-client relationship. Their work is based on a need for an active partnership in a participatory medicine, one in which patient/clients take on significant responsibility for doing a certain kind of interior work in order to tap into their own deepest inner resources for learning, growing, healing, and transformation.

Mindfulness-Based Cognitive Therapy (MBCT) is a form of MBSR that includes information about depression as well as cognitive therapy-based exercises linking thinking and its resulting impact on feeling. MBCT demonstrates how participants can best work with these thoughts and feelings when depression threatens to overwhelm them and how to recognize depressive moods that can bring on negative thought patterns .

Mindfulness is a lifetime engagement--not to get somewhere else, but to be where and as we actually are in this very moment, whether the experience is pleasant, unpleasant, or neutral.

Cultivating Healthy Thoughts, Speech, and Actions

It’s not stress per se but your reaction to it that can affect your health. As philosopher and psychologist William James said, “The greatest weapon against stress is our ability to choose one thought over another.”

Your reaction to unmet needs always starts with a thought, and then you react to that thought with a word, an emotion, or an action.

Meditation helps you to have the appropriate thoughts and actions in response to the different challenges of life. When you start meditating, you release the struggle; the right action comes to your awareness more naturally. You’re more in tune with the thoughts that lead to healthy actions.

This mindfulness of what’s best for your body is one way to help prevent disease. This allows you to break bad habits, like overeating or smoking, because you’re more conscious of what’s best for your health.

Pain Management

Pain is the main complaint among patients I see, and chronic pain can lead to other health issues. It not only increases stress, but also can trigger a reliance on painkillers.

Just as meditation can help you cultivate healthy thoughts, there’s evidence that it can help decrease chronic pain. After all, it has the power to transform the brain’s structure. Meditation trains the brain to be more present and focused, so patients who meditate don’t anticipate pain. This helps reduce anxiety, depression, and insomnia.

Mind-Body Balance

If the mind is restless, caught in the prison of your 60,000 to 80,000 thoughts per day, worrying about the future, or suffering because of the past, then the body is also struggling.

In Western medicine, the body is categorized into individual systems and organs in order to study it, and to treat disease. But the body has an underlying intelligence that connects every cell. This intelligence allows it to perform every function the way it’s supposed to, if we do not interfere. Just as the different organs of your body work together for a common goal, the mind and body function together, too.

This is the reason why meditation is so effective when the body experiences an imbalance. Meditation takes you beyond your thoughts, to a place of peace and silence. It calms the mind and therefore calms your body. A calmed body can find its way back to balance.

Author’s Note:

Please note that any decision regarding your treatment must be discussed with your doctor first—it’s best not to treat pain or any other symptom on your own. Treating a disease depends on modern medicine, science, and technology.

Luckily a holistic approach is becoming more common. Many doctors now note the importance of the mind-body connection, and recognize that meditation can be a powerful tool for regaining health. It’s important to note, however, that meditation is in no way a substitute for medical treatment if you’re facing a disease. It’s simply a doorway to a healthy lifestyle.

Learn More about Your Illness:

  • Learn how to live with your chronic illness. At first it might seem like it is controlling you, but the more you learn and can do for yourself, the more normal and in control you will feel.
  • Know more about your illness so you can manage it and feel better about it. Find information on the Internet, at a library, and from social networks, support groups, national organizations, and local hospitals.
  • Ask your provider for websites you can trust. Not all the information you find online is from reliable sources.


Continue your education about Ritual Humanism® in our next section, Ritual.