The first step to effective caregiving for those with Multiple Sclerosis is caring for oneself, according to researchers Marie Namey, a clinical nurse specialist in Multiple Sclerosis at the Cleveland Clinic Main Campus, and Ellen Reardon, a dietitian at Walden Behavioral Care. The presentation “Compassion Fatigue: Caring for the Caregiver,” presented at this year’s 2014 CMSC ACTRIMS Annual Meeting in Dallas, demonstrates how to fight the condition known as “compassion fatigue,” which gradually decreases the feeling of compassion within people who work directly with those suffering from chronic or progressive diseases such as MS, and often found in nurses, psychologists and first responders.

“If you don’t care for yourself physically, emotionally, and spiritually then eventually there will not be enough of you left to care for anyone else,” the researchers noted during the presentation. The condition was first identified in nurses in the 1950s, which presented with feelings of hopelessness, incompetency and self-doubt; decrease in feeling pleasure; constant stress; anxiety; and decrease in productivity.

Therefore, the researchers consider it crucial for caregivers who are tasked with treating or supporting those with MS to balance the care of both the body and the mind. To deal with the trauma experienced by patients, caregivers may need to have a calm and safe retreat where they can retreat to, as well as a strategy to deal with loss and grief. “Stay clear with commitment to career goals or your personal mission, know how to focus on what you can control and look at situations as entertaining challenges and opportunities, not problems or stresses,” they recommend.

However, recovery from stress, anxiety, and trauma associated with caring for those with chronic illness also depends on keeping the physical self strong through exercise, relaxing, adequate sleep habits, good nutrition, and medical and preventive care.

Specific advice for self caring includes breathing exercises, having some sort of a treat before talking to people, sitting calmly at a desk and cupping the eyes with the hands, engaging in joyful thoughts, keeping in touch with loved ones during the day, and meditation. “Put joy, love, hope, laughter and gratitude in each day,” they summarize.

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For those caregivers who are seeking to recover from the effects of compassion fatigue, researchers recommend compassion cultivation training, during which patients may perform traditional contemplative practices as well as search for contemporary psychology and scientific help. It is also important to redevelop empathy and kindness for oneself and others.

Compassion fatigue is a combination of physical, emotional, and spiritual exhaustion experienced by those who help others in distress. The condition can be identified by indicators like anxiety, irritability, mood swings and difficulty concentrating. It leads to detrimental effects in individuals, both professionally and personally, since caregivers may also experience a decrease in their self esteem, distrust, changes in appetite, sleep, and other habits. However, some cases can even cause depression, which can lead to self medication.

Caregivers who experience compassion fatigue go through a series of stages that begin with what Namey and Reardon term as the zealot phase, in which the person still feels committed and enthusiastic. The second stage, the irritability phase, turns enthusiasm into displeasure, and complaints about work begin, as well as inappropriate use of humor. In the withdrawal phase, the person begins to start avoiding the patients, feeling lapses of concentration, and even avoids family and friends.

The fourth phase is the zombie phase, in which the rage begins, the relation between coworkers may be conflictual, and patience is at a minimum level among caregivers. This pattern leads to some people feeling overwhelmed and leaving the profession, sometimes associated with somatic illness and the endurance of the symptoms, while others feel resilient and transform their attitude. In either case, the effects of caring for those with progressive diseases such as Multiple Sclerosis are indeed real. Both Namey and Reardon’s presentation at the 2014 CMSC ACTRIMS on the subject serves as starting point for identifying how to avoid and deal with the difficulties of caregiving in MS, which in the end benefits both patient and caregiver alike.

Slides from the presentation can be reviewed here.