It was a regular winter’s day—much like today—when I first met Robert at the dialysis unit. He was a pleasant, quiet man in his 50s, but the fact that this was the last place he wanted to be was written all over his face. When we began talking he told me that he was “fine,” that being on dialysis was “fine” and that, in general, everything was... “fine.” As we talked more, I asked him to tell me about the circumstances surrounding his diagnosis and how he reacted to the news that he would need to start dialysis. He revealed that he had known for some time that his kidneys were failing and that his doctor kept telling him that he would likely need to start dialysis. He admitted that he had refused to believe his doctor; he could not believe that HE would need dialysis. He told me that the hardest thing to get used to was the idea that he would be stuck on dialysis forever, unless he received a transplant. “Forever,” he repeated to himself again.
According to the CDC, chronic illness in its many forms affects about half of all adults in the United States. Chronic illnesses are long-lasting conditions that can be controlled, but not cured. They encompass a large range of diseases with a wide variety of symptoms, some of which can be more physically debilitating than others. Symptoms, such as pain, exhaustion, as well as the psychological impact of being ill, can be particularly difficult to cope with as they are usually invisible to others. Quite often they significantly disrupt people’s lives. Understandably, people affected by chronic illness are highly vulnerable to experiencing mental health issues, particularly anxiety and depression.
In the case above, Robert’s denial of his new circumstances is a common reaction when someone is confronted with unexpected and unwelcome news about her/his health and the implications for how her/his life will change. Often the response to a difficult diagnosis is a classic grief reaction in which patients move through the stages of grief—denial, anger, bargaining and depression—until finally experiencing a sense of acceptance.
So how does someone like Robert learn to cope and adjust to being chronically ill? Let’s discuss some of the tools, techniques and strategies that clinical research has proven to be effective and that I have successfully employed to help patients in the dialysis clinic and my private practice clients.
1. Your response is normal: To start with, I began helping Robert recognize that his reactions and feelings after his diagnosis were normal initial responses to the changes occurring in his life. Oftentimes both the person with a recent diagnosis and those who are trying to support him or her don’t know what to expect and are overwhelmed by the cloud of uncertainty that looms over the future. Recognizing that these difficult feelings are common reactions to illness and normalizing them often aids the adjustment process. The same holds true for other emotions often experienced by people with chronic illness, such as helplessness, frustration, hopelessness, sadness, resentment, irritability and anxiety. The knowledge that there is no expectation of “just being OK” and that the gamut of feelings and thoughts about being ill are not only acceptable, but a natural human response, can be very helpful.
2. Take an active role in your care: Another emotionally healthy response is to take an active role in your health. Avoidance, a common coping mechanism, typically predicts long-term maladjustment to illness and, in fact, poorer health outcomes. Being proactive can help people feel empowered and regain some sense of control. This includes becoming well educated about treatment options and being involved in treatment decisions. For Robert, taking an active role involved learning about his treatment options and assessing the possible ways his quality of life could be improved, both immediately and in the long term. This enabled him to impact the direction his newly challenging life would take and sparked some hope and optimism about the future.
3. Live a little: Doing some basic, practical things can also help. Gradually incorporating new or favorite activities in modified or measured ways into a routine can make life feel more fulfilling and helps reduce the burden of illness. Robert decided that he would take up a former passion by playing piano and resuming lessons. Accomplishing a task, however small, every day or having a routine lends stability and consistency to life.
4. Circle of friends: Social supports are of immeasurable importance in adjustment to illness. Friends and family can help people use more effective coping strategies by offering understanding and motivation to take constructive action. Research shows that having a support system leads to an increase in positive health behaviors and to the minimization of risky behaviors.
5. Join a support group: Sometimes more formal settings, such as peer support groups, can be greatly beneficial. Support groups provide a forum to discuss your experiences, feelings and challenges with others who are facing similar issues and understand what you are going through. The people in the group provide emotional support to one another and help each other feel less isolated in facing illness. Support groups also offer a place to share ideas and learn skills and strategies for coping or managing specific problems.
6. Communication is key: Difficulties in relationships often arise for those who are chronically ill. Some people experience a fear of sounding like they complain too much or of overburdening their family or friends. Another common concern is that others won’t be able to see past the illness if one is open about it, but that they will be defined by it as “sick.” This often leads to people holding in their feelings. In turn, the lack of communication only adds to the difficulties of adapting to illness for all those involved by ratcheting up frustration, anger, stress or resentment and by causing further distancing and disengagement. Communication is the key factor in helping to make changes within relationships to accommodate the feelings on all sides regarding a person’s illness. For those who find this more challenging, working with a therapist to talk about the root of the communication problem or to strategize productive ways to approach these conversations with loved ones can be very helpful.
7. Tune in to the present: Mindfulness, meditation, yoga and visualization exercises can help to create breaks from stress and a range of difficult emotions. Mindfulness, or the practice of maintaining a moment-by-moment awareness of your thoughts, feelings, bodily sensations and surrounding environment, has been found to be extremely helpful for people suffering from illness, as well as from depression or anxiety. The aim is to tune into what we’re sensing in the present moment rather than rehashing the past or imagining the future. Patients of mine who incorporated mindfulness exercises into their routine gave me primarily rave reviews about the positive impact it had on their lives. They related to me that they and their families had seen improvements in their moods, outlooks, stress level and even improved sleep.
8. Try therapy: Illness can bring to the forefront some complex, painful and scary thoughts and feelings about our mortality, interpersonal roles, family dynamics and many other things. Psychotherapy provides a private setting to deal with sensitive emotional and relationship issues. It provides a collaborative space where feelings can be expressed openly and without judgment. The therapeutic process helps you gain insight into thoughts and patterns of thinking about your illness and other life issues, as well as into how those impact your behaviors and relationships. Therapy is also a place where you can learn new coping skills to deal with the current issue, as well as to become better at handling future challenges.
For many people facing the challenge of a new diagnosis or who are struggling to manage the emotional impact of illness, successfully coping may seem out of reach. Many of the ideas we touched on may seem simple, but their use as strategies for coping with chronic illness can lead to profound positive change. I hope that some of the strategies we discussed can be effective in helping you or someone you care about build a new sense of normal, leading to a more fulfilling, and a more empowered life.
Temima Danzig, LCSW, is an award-winning dialysis social worker and a psychotherapist in private practice in Teaneck, NJ. She can be reached at (201)357.5796 or visit her website at www.temimadanzig.com.
By Temima Danzig, LCSW