by Reji Mathew
From the Editor: The following article is reprinted from the Diabetes Self-Management Quarterly for March 12, 2009. According to the author, the journey of managing a chronic illness often follows a bumpy road with unexpected twists and turns. Successfully taking charge of any chronic condition requires good medical care, access to resources, and social support. Often, however, it’s a person’s own ability to cope with the daily, nitty-gritty realities of the condition that is the essential ingredient for overall wellness. Dr. Mathew is a psychotherapist and clinical instructor at New York University in New York City.
In the case of diabetes, achieving a consistent balance between exercise, medication, and diet so that blood glucose levels stay in the desirable range is a daily, ongoing challenge. Being skillful in each of these areas is tough enough, but the real hurdle is making them all work together to manage the condition. For most people it can feel like an elusive formula to master.
Unfortunately, the health-care professionals who care for people with diabetes and even the friends and family members of people with diabetes do not always recognize how stressful having and managing diabetes can be. Dr. Deborah Languish, a psychotherapist who specializes in working with people with chronic illnesses, has counseled many people with diabetes. She says, “For many of the diabetic patients I work with, there is a lack of support and acknowledgment of the feelings of stress and strain they may feel on a daily basis. I find that diabetic patients get a common message from practitioners: ‘You are not in control,’ resulting in blaming the patient rather than recognizing that this is a complicated disease requiring time and practice to develop the skills needed. It is a stressful process. It takes a lot of mental work.”
Jane, forty-two, has Type 2 diabetes. She describes the type of stress she felt and what she did to address it: “Even though diabetes is an invisible disease, I don’t think that people who struggle with diabetes ever forget they have it. Everything I put in my mouth I have to think: 'Is this good for me?’ This started to really stress me out, and then I would give up and eat poorly and then get sick. When I reached my breaking point, I finally decided to work with a nutritionist to learn more about food and also a psychotherapist to work with my anxiety.”
Marge, thirty-eight, has both high blood pressure and Type 2 diabetes. Like Jane she struggled with issues related to food choices: “I could not get over the feeling of 'restriction.’ I am restricted from eating this for the sugar, restricted from eating that because of the fat. I was starting to feel deprived and unhappy. I talked with my counselor. I learned that food was the main stress reliever for me. I found other ways to feel nourished, and, whenever I have the deprived feeling with food, I distract myself.”
In my own counseling work with people who have diabetes, I have learned of two central issues with which people struggle. First, diabetes management is not simply about access to good education but also about developing discipline—learning to stick to routines, plan meals, and schedule exercise. This is particularly difficult for people who have not previously practiced much discipline in their lives and do not have the skills of self-discipline. For these people it can be overwhelming to suddenly have to take control of managing an illness. As one person said to me, “I had to suddenly deal with exercise, diet control, and checking my finger sticks three times a day, overnight and all at once. It was overwhelming and hard to get used to.”
Second, people are so often inundated with information on the health risks associated with diabetes that they don’t have time to process the feelings that arise when they are diagnosed. Without processing, however, the feelings—which often include fear, a sense of loss, anger, and frustration—tend to linger, and they can get in the way of effective diabetes management. Not taking the time to fully recognize or express one’s feelings about diabetes can make it harder for a person to take full responsibility for his diabetes and to perform all of the tasks necessary to manage it.
There is hope, however. The skills of self-discipline can be learned, and it’s never too late to start addressing the emotional burdens of diabetes, particularly since diabetes tends to present new challenges—causing new emotional reactions—over time.
Developing new coping skills
Learning to cope with life’s stresses starts in childhood, as children model the responses and behavior of those around them. Some parents and schools go beyond just modeling and offer instruction to children on such skills as recognizing their feelings, expressing them in a constructive manner, calming themselves down, communicating with others, and problem-solving. However, even the best set of coping and interpersonal skills learned in childhood and in subsequent years may not be adequate for dealing with the new stresses presented by developing a chronic disease. If contemplating the need to manage your diabetes for a lifetime makes you feel anxious, recognizing that you can improve your coping skills or develop new ones can be a source of relief and hope.
The basic idea of a coping strategy is that it should ease stress, provide comfort, or enhance one’s mood in a difficult situation. However, it’s important to be wary of coping mechanisms that provide immediate gratification but have secondary consequences. For example, shopping can provide immediate stress relief, but overuse has secondary consequences for your budget. The key is to look for coping strategies that provide comfort but also have a constructive, lasting impact on the mind and body.
Since lifestyle choices directly affect diabetes control, it is important to develop a holistic plan for managing the condition that includes not just diet and exercise but also ways of coping with stress, particularly since stress can affect blood glucose control. For some people seeing a mental health-care provider and taking antidepressant or anti-anxiety medicines may be part of the plan for coping with stress. Practices such as yoga, deep breathing, using humor, journaling, pet therapy, aromatherapy, acupuncture, massage therapy, biofeedback, exercise, or meditation may also be useful for coping with chronic stress, regardless of whether a person seeks the services of a mental health-care professional.
Paul, who was diagnosed with Type 1 diabetes at the age of sixteen, found some strategies that worked for him: “Breathing and meditation exercises felt a little New-Agey to me at first, but I have noticed I am able to calm myself down with practice when I am feeling stressed out about all the effort that goes into controlling my diabetes.”
For people who need help developing self-discipline, a variety of tools can help. One technique is to post visual or written reminders—in places such as the bathroom mirror or the refrigerator—to check blood glucose or perform other diabetes tasks. Another is to keep a diabetes log that includes a schedule for monitoring and taking medicines. Learning how other people manage their diabetes can also provide practical tips and motivation, so meeting others through support groups or online communities or even reading about other people’s experiences with diabetes in books or magazines can be helpful.
As you explore new coping strategies, you’ll find that different strategies match different needs. For example, you may find that doing yoga or meditating is particularly helpful when you need to relax. Or you may find that using humor, playing with a pet, or socializing with friends helps to energize you. Exercise may do the trick when you need to release pent-up stress. The important thing is to stay open to trying various strategies to find what works for you.
In many cases you will call upon a mix of skills to deal with the specific stressors in your life. Lisa, seventy-six, coped with a source of stress that she faced both by asking for help and also by learning some new computer skills. She says, “My husband and I are on a fixed income. I am diabetic, and he is in a wheelchair. Maintaining a healthy diet is expensive. I was feeling worried and overwhelmed. I told my niece, who was helping us plan our meals. She orders bulk items from the Internet to reduce costs, and I go to the grocery for the fresh foods. I am doing better with managing my diabetes. I felt ashamed to talk about this. Exercise is free, but not food. I did not know how to use the computer and would not have thought of it as a coping skill. My niece is now teaching me how to use the Internet.”
Chronic illness management can easily feel like a second job. Keeping up with doctors’ appointments and medicine regimes can be emotionally consuming, and it is natural for frustration or boredom to set in. One coping strategy that may help with frustration or boredom is to reward yourself for carrying out necessary tasks. For example, you might reward yourself for keeping a doctor’s appointment by scheduling time with a friend or taking an afternoon off to watch a good movie.
Peter, a thirty-two-year-old with Type 1 diabetes, tells how he evaluated his coping strategies during a time of change in his life and later rewarded himself for his efforts: “During my first week of graduate school, I suffered a hypoglycemic attack during my commute to school. It was very scary. I talked with my psychotherapist. Before grad school I was a pro in managing my condition. Once I started school, my routines to check my blood sugar would waver dramatically on a daily basis. I could not pinpoint why. I kept a coping-skills journal for three weeks, in which I recorded my class schedule and planned breaks, as well as unplanned interruptions such as traffic delays. What my therapist and I learned was that my new goal of getting a graduate degree took up much of my mental energy, which made me easily forgetful and overwhelmed. I had to change the way I planned my days and took breaks. I now keep extra food with me on my commute to school because I never know if I could be delayed. I also let my professors know of my needs in case I need extra support. I rewarded myself with an iPod for getting through this period.”
Working on relationship skills
In addition to exploring new coping and stress-reduction skills, successful management of a chronic illness often requires building interpersonal relationship skills. Many people find it hard to accept that illness and disability often require depending on others. Developing your people skills can make it easier to ask questions, initiate communication, and ask for help, but it takes practice.
Exercises that may help in this area include role-playing, in which you rehearse a potentially anxiety-provoking conversation with a trusted friend, who plays the role of the person you need to talk to (such as a doctor or an insurance company representative, for example). It may also help to write down requests before you make them orally. And it can help to problem-solve with a psychotherapist before taking on a feared situation.
Pauline, fifty-one, shares her experience of recognizing her need to improve her people skills: “I am a nurse with diabetes. At first, since I am a health professional, I was very focused on the medical risks and spent a lot of time worrying about future dangers: `Am I going to lose my vision; am I going to get neuropathy?’ My doctor assumed I knew everything and that I could adjust. But, even though I knew everything in my head, I still had to emotionally accept and deal with everything. To take control of my diabetes, I had to learn how to communicate and be honest about what I needed and to ask for help. Even though I take care of people, it did not mean that I knew how to take care of me.”
One important point when asking for help and support is to spread your requests out over a variety of people so that no one person, such as a spouse or adult child, gets burned out. You may need to expand your social network to prevent this. Joining a support group is one way to meet others facing similar challenges who may be able to provide emotional support. Meeting regularly with a psychotherapist can also help both with emotional coping and with building coping and interpersonal relationship skills.
Barbara, fifty-three, a cancer survivor with Type 2 diabetes, shares how working on her people skills improved her relationship with her husband: “I now ask my husband, `Do you need a break?’ I don’t take his burnout personally any more. We agreed to bring in someone to help me at least once a week so he can have a break from caregiving. This has reduced a lot of the arguments we have.”
Blowing off emotional steam
Finding ways to empty out the daily emotional stress of a chronic condition is essential. Chronically ill individuals often grapple with anxiety, frustration, or emotional fatigue on a daily basis. Traditional psychotherapy can help, and so can taking part in an expressive art such as writing, dance therapy, art therapy, music therapy, or drama therapy. Any of these can provide a constructive venue for emotional expression and stress release.
Martha, a sixty-year-old with Type 2 diabetes who is recovering from a hip replacement, found a creative solution to her feelings of social isolation: “I did not feel comfortable with regular talk therapy support groups. I instead joined a poetry group. I found that many of the feelings I was feeling, others could relate to for different reasons. This helped me know myself as more than a person with diabetes.”
The most important thing to remember is that improving your coping skills can help you to feel more hopeful. Knowing that you can deal with the inevitable stresses in your life is empowering and provides a sense of control. Learning new coping skills can even be a source of enjoyment, as you develop areas of personal strength you didn’t know you had. Life is a limitless road of discovery. So stay curious, and try to enjoy it along the way.