Rhonda Williams, Ph.D., is an assistant professor in the Department of Rehabilitation Medicine at the University of Washington School of Medicine in Seattle and a clinical psychologist in the Center for Polytrauma Care in Rehabilitation Care Services at the Veterans Administration Puget Sound Health Care System. Her research focuses on getting patients to adjust to living with a disability, providing social support and self- management. Williams’ works with veterans who have a serious physical illness or injuries, such as amputations, brain injury, burns, multiple sclerosis and strokes. Williams also works with veterans who have sustained combat-related injuries in Iraq. Here, Dr. Williams explains how people can cope with a health diagnosis.
People feel uncertain how this will affect them and their future. Will they still be able to earn a living? Can they remain in a parent role and does this make them a less attractive mate? These are some of the fears I hear voiced. But there are as many fears out there as there are individuals. A surprising number of people actually welcome the diagnosis because then they are relieved that their symptoms have some explanation. It validates their experience and for many it indicates the beginning of treatment.
It’s a myth that they go through certain phases. Some may experience grief, shock, anger and disbelief, but there’s no set order of the phases people experience and no requirement that they must go through certain phases. There are generally two ways of coping: emotion focused and problem focused. Emotion-focused coping involves expressing one’s emotions, such as venting, crying or expressing anger. Problem-focused coping is more active and involves taking steps to solve the problem to the best of their ability. With problem-focused coping, you get better outcomes and educating yourself is a prerequisite.
There’s no right answer to this. It depends on the individual. Generally, yes—education can facilitate hope and the process of learning about your options can instill a sense of self-efficacy and help you develop self-management and coping skills. A patient needs to learn about what they have, what treatment options are available and recommended, and where to focus their energies. People need to have two kinds of hope beliefs—that they are capable of managing the challenges of their disease and that they have resources available to help them manage those challenges.
First, realize that for many people a scary diagnosis is truly a transient disruption—it may throw them off course for a while, but they are resilient and return to “equilibrium” pretty fast. In other words, be aware of the fact than an unpleasant health diagnosis is not a sentence to some inevitable series of problems. A surprising number of people live satisfactory lives even with significant illness or injury.
Some specific tips: Give yourself permission to go into survival mode initially. Take good care of yourself. Avoid making any other unrelated major life decisions if at all possible. Initially the diagnosis may be all consuming. Seek social support that’s helpful to you. If a peer visitor [someone who has had the same experience that you’re having and is formally trained] is available, seek one out and meet with him or her. This will give you an opportunity to interact with someone who successfully copes with the same illness. This provides a different kind of social support from someone who has been through something similar.
First, recognize that it’s OK not to have positive emotions after an unpleasant health diagnosis. You can work toward being positive, but you shouldn’t be pressured to do so. If you want to be positive, focus on your small successes. Develop the skills you need to manage your disease. Deliberately cultivating gratitude can also help keep one’s illness/injury in perspective. Optimism is a personality trait. We are not that able to cultivate it, per se. We can, however, cultivate hope and our own coping skills. You can learn to be a self-manager—advocate for yourself and take care of yourself.
Some of them have shifted their focus from “I give up” to “I have this disease, but it’s only a part of who I am.” They have decided they are the experts on themselves and actively participate in their care and make decisions. That attitude is empowering and requires that they have some hope. That’s what I try to foster in my patients. Many patients with catastrophic injuries or bleak prognosis still find ways to be self-managers and manage their relationships, their life roles, their reactions and create what is meaningful for them. I define this as a success. It doesn’t mean they aren’t restricted. Maybe they can only be in charge for an hour a day, but they seize that.
I practice what I preach and really try to approach new things by learning about them and being an active problem solver. I believe in meditation and mindfulness as an approach to being.
…our systems languish if we are under-challenged. We are not designed to be idle for an extended period of time. Without change, we would never grow.
I got divorced, remarried and had children.
For more information on Dr. Rhonda Williams, visit depts.washington.edu/rehab.