Psychological Issues in MS
Psychological Issues in MS
Randi Jones, Ph.D.
June 6, 1998
Although it may seem that multiple sclerosis touches all aspects of an affected person's life, it is often helpful to clarify and categorize its effects, similar to a divide and conquer strategy. Sometimes being able to name and list problems and issues that seem overwhelming is helpful in order to work out a plan for coping and adjustment. A way to think about these issues is as being direct or indirect.
Direct psychological/cognitive/emotional effects of multiple sclerosis include symptoms which are known to be the result of physiological changes in the brain and spinal cord. These include:
fatigue depression cognitive changes such as memory loss or slowed mental processing (thinking) sexual dysfunction
There are specific medications and interventions which are useful in combating these symptoms.
Indirect psychological concerns arising from the direct effects on the body are wide ranging. These issues can be described as internal, that is, the affected person's own emotional responses to the disorder, or external, meaning the responses, emotions and thoughts of others. The first internal struggles that a person with MS may face, in addition to years of troubling symptoms which are variable and sometimes difficult to describe, may include frustration and fear. Examples of fears related to MS are loss of control over one's body or being a burden to one's family. Anger is a very natural emotional response, both to possibly having been misdiagnosed or to having an illness which requires treatment and accommodation. When an accurate diagnosis is reached, the affected person may be shocked or afraid, butsometimes the diagnosis brings a sense of relief. "At last, someone has a name for what is wrong and there are treatments for it!" Our thoughts and attitudes are another source of internal emotional responses. For example, the person with MS may have very high standards regarding work performance or maintenance of a household. With the onset of MS, the affected person may no longer be able to function at 100% and may have to compromise at, say 75%. Having to lower personal standards, let some things go, or rely on others for assistance in performing tasks which were once easy requires an adjustment in attitude. Accomplishing this without an accompanying loss of self esteem is often difficult. Humor can be very helpful in making this transition. A light touch can smooth the way when feelings are struggling to cope with a changing body.
In the external world, the MS individual's family, friends and coworkers may not know what to expect. Deadlines may be missed, lunch dates forgotten, children's school plays not attended, all for what may seem like inadequate explanations or excuses. The social network of the affected person may become strained and anger and rejection in the individual’s friends and family may result. Once the problem is identified, some accommodation may be attempted in the job or home, but since the symptoms of MS are frequently not visible to others, others may be puzzled. It is possible that a person who has MS may face discrimination, either overt or subtle. The person affected with MS, who may be suffering from fatigue and occasional loss of mental efficiency, is placed in the position of having to educate his/her colleagues and friends. In addition, the variability of the symptoms may require a new set of coping strategies with each change in symptom, so that the plans and changes that worked previously are no longer effective. This whole process may set in motion a loop which can be self-perpetuating and difficult to stop.
Although this cycle of psychological concerns may seem inevitable and impossible to break, it is possible to create change at any point of the cycle. It is generally known that active, problem-solving strategies are more effective than avoidance or denial. Examples of such strategies might include the following:
Medications to reduce fatigue or depression. Education of friends and co-workers. Frank talk with your partner. Reflection, self observation or psychotherapy. Learning more about MS through reading* or joining a support group Start an exercise program (with your doctor's approval) Make a point of having fun Develop hobbies or interests which sustain you Focus on improving your family relationships Make learning to adapt to MS a team effort Learn about stress reduction methods and use those that suit you regularly.
*The MS Society has a number of publications which are relevant on this subject. Examples include: Taming Stress in MS, Solving Cognitive Problems, Sexual Dysfunction.
Copyright © 1998 Randi Jones, Ph.D.