Multiple Sclerosis Centers of Excellence
Coping Strategies for People with Multiple Sclerosis
Mark Leekoff, MD, MPH
MS is an unpredictable disease that is often accompanied by stress. Anxiety, depression, and other psychiatric problems are often experienced by people with MS. The rates of these problems in people with MS are higher than in those who do not have MS. People with psychiatric problems in connection with MS tend to report lower satisfaction with life. Additionally, studies show that psychiatric problems can result in worsening of MS disability.
While psychological and social stress is common in those with MS, some people also experience post-traumatic stress disorder (PTSD). PTSD is a disorder involving prolonged reaction in those who have undergone a scary or dangerous event. PTSD can be due to trauma from the battlefield, sexual assault, childhood abuse, or even due to a traumatizing medical diagnosis or procedure. A recent pilot study from the VA MS Center of Excellence East showed that a prior diagnosis of PTSD in those with MS may be linked with increases in the number of relapses (1.2 relapses in MS participants with PTSD in the two years of the study compared to 0.37 in MS participants without PTSD). Those with MS and PTSD were also more likely to have new MRI brain lesions (60% of MS participants with PTSD had new lesions in the two years of the study compared to 16.7% of MS participants without PTSD).
It is thought that PTSD and the stress related to it may potentially lead to additional neurochemical changes, leading to further inflammation which leads to relapses and brain lesions. On the other hand, PTSD could lead to decreased adherence to MS medications but there was no correlation with this in the study. Given that psychiatric conditions associated with MS can lead to stress which can lead to worsened outcomes, strategies should be implemented to reduce stress. Coping is a behavioral strategy that can help to mitigate stress.
One strategy for coping with MS-related stress is art therapy. While art as a form of therapy has been around for centuries, art therapy has become popular over the years to help people cope with chronic medical conditions. Artwork such as painting, writing, or creating music can help people with MS bring their stress and worries into the open, which can help to decrease the stress. Studies have shown that art therapy in those with MS can also help increase confidence and improve emotional well-being. Art therapy can also help those who are more disabled work on improved arm control.
Another coping strategy shown to be useful is mindfulness. Mindfulness is defined as focusing on the present moment while understanding and accepting one’s feelings, thoughts, and sensations. Practicing mindfulness originated in Eastern philosophy as a method for relaxation. Mindfulness has been shown to also help with managing anxiety, depression, and chronic pain. Classes in mindfulness can be taken and typically last around 8 weeks. They tend to relate to different types of meditation such as being aware of the number and length of breaths being taken at a time, body awareness, and yoga. The VA’s War Related Illness and Injury Study Center is offering free, phone-based Mindfulness Meditation classes the first two Fridays of every month at 11 am EST. Simply call 1-800-767-1750, 54220# to join.
Exercise is another excellent way to cope. Exercises such as jogging, swimming, and using a stationary bicycle have been shown to be helpful for those with and without MS. Your healthcare team, including the physical and occupational therapist, can help create a personalized program for you to address your specific abilities and needs. Another type of exercise worth seeking out is yoga. Yoga involves breathing and stretches that center on the spine. Depending on one’s balance, changes can be made to ensure safety. Another similar exercise to yoga is Tai Chi which is more “gentle.” Tai Chi also involves breathing, slow movement, and relaxation.
Finally, studies have shown that having a pet helps some people cope with a health problem. Being around pets can help take your mind away from dealing with the stress with MS. It can also help with the stress of psychiatric conditions related to MS. A service pet is another option for those who need assistance with medical issues such as vision or walking. For those who do not want to own a pet, health care programs are increasingly adopting a pet program where specially trained pets work with people.
These are just a few of the coping strategies of many that exist. Combining multiple coping skills can be ideal. Discussion of these coping strategies with your treatment team, including physicians, mental health providers, physical therapists, occupational therapists, and social workers, to optimize their effectiveness is essential.