From The MS Information Sourcebook, produced by the National MS Society.
In addition to its physical symptoms, MS may have profound emotional consequences as well. At first, it may be difficult to adjust to the diagnosis of a disorder that is unpredictable, has a fluctuating course, and carries a risk of progressing over time to some level of physical disability. Lack of knowledge about the disease adds to the anxieties commonly experienced by people who are newly diagnosed. In addition to these emotional reactions to the disease, demyelination and damage to nerve fibers in the brain can also result in emotional changes. Some of the medications used in MS-such as steroids-can also have significant effects on the emotions. Some of the emotional changes observed in MS include the following:
- Major depressive episodes as well as less severe depressive symptoms
- Grieving for losses related to the disease
- Stress and reactions to stressful situations
- Generalized distress and anxiety
- Emotional lability or mood swings
- Affective release, also known as "pseudobulbar affect"
- Inappropriate behavior such as sexual aggressiveness
"Depression" is a term that people apply to a wide variety of emotional states. These may range from feeling down for a few hours on a given day to severe clinical depression that may last for several months. People with MS and all those closely associated with them should be aware that depression in its various forms is common during the course of multiple sclerosis. In fact, studies have suggested that clinical depression, the severest form of depression, is more frequent among people with MS than it is in the general population or even in persons with other chronic, disabling conditions. Depression does not indicate weak character and it should not be considered something shameful that needs to be hidden. Depression is not something that a person can control or prevent by willpower or determination. In its most severe forms, depression appears to be a chemical imbalance that may occur at any time, even when life is going well. The most effective treatment for depression is a combination of psychotherapy and antidepressant medication. Although support groups may be helpful for less severe depressive symptoms and generalized distress, they are no substitute for intensive clinical treatment.
Persons with MS often experience losses-for example of the ability to work, to walk, or to engage in certain leisure activities. The process of mourning for these losses may resemble depression. However, grief is generally time-limited and resolves on its own. Moreover, a person experiencing grief may at times be able to enjoy some of life's activities. Clinical depression is more persistent and unremitting, with symptoms lasting at least two weeks. Grieving is generally related to changes in self-image triggered by the disease-e.g., no longer being able to think of oneself as an athlete. However, this process seems to be evolutionary and, with time and adaptive coping strategies, the individual can develop an altered self-image.
Grief generally resolves with time even without treatment. However, supportive counseling, support groups, as well as an understanding and supportive environment can help the process along.
Life is full of stress and MS generally adds a hefty dose of disease-related stress to the mix. MS is unpredictable and just anticipating the next exacerbation can be a significant source of stress. MS can also lead to some major life changes such as loss of mobility and interference with work. Thus the person with MS faces significant challenges in coping with a potentially stressful life.
Stress has also been cited as a possible precipitant of the onset of MS or a trigger for exacerbations. Studies of the effects of stress on MS, however, have had conflicting results. It is important to not fall into the trap of trying to "avoid stress," a nearly impossible task given the realities of life. Moreover, family and friends should not make the mistake of feeling guilty because they think they may have "created stress" in the person's life. Stress is part of the reality of living and probably the best approach, rather than trying to avoid it, is to learn how best to manage and cope with it.
Stress-management programs are readily available and have become an accepted part of the treatment of many medical disorders. Professional counseling as well as support groups can also help in learning how better to cope with stress.
Generalized Anxiety and Distress
MS is a generally disabling, progressive, and unpredictable disease that can cause significant anxiety, distress, anger, and frustration from the moment of its very first symptoms. The tremendous uncertainty associated with MS is one of its most distressing aspects. People with MS never know when and if another exacerbation will occur or how severely they may be affected in the future. They do not even know how they will feel from morning to afternoon or one day to the next. The loss of functions and altered life circumstances caused by the disease are also significant causes of anxiety and distress.
Professional counseling and support groups can be very helpful in dealing with the anxiety and distress that may accompany MS.
Emotional lability or "moodiness" may affect persons with MS and is manifest as rapid and generally unpredictable changes in emotions. Family members may complain about frequent bouts of anger or irritability. It is unclear if the emotional lability observed in MS stems from the distress related to the disease or if it is caused by some changes in the brain. Whatever the cause, emotional lability can be one of the most challenging aspects of MS from the standpoint of family life. Family counseling may be very important in dealing with emotional lability since mood swings are likely to affect everyone in the family. Severe mood swings respond well to low doses of the anticonvulsant medication valproic acid (Depakote®).
Pseudobulbar Affect (uncontrollable laughing and/or crying)
A small percentage of persons with MS experience a more severe form of emotional lability in which there are uncontrollable episodes of laughing and/or crying that are unpredictable and seem to have little or no relationship to actual events or the individual's actual feelings. These changes are thought to result from lesions-damaged areas-in emotional pathways in the brain. It is important for family members and caregivers to know this, and realize that people with MS may not always be able to control their emotions. Several medications, including amitriptyline. levodopa, desipramine, fluoxetine, and fluvoxamine, have shown benefit in small clinical trials. Avanir pharmaceuticals has recently completed a successful large-scale trial of NeurodexT a patented, orally-administered combination of dextromethorphan and an enzyme inhibitor to sustain a
therapeutic level of dextromethorphan in the body. Avanir has applied to the FDA for approval of this medication as a treatment for people with MS.
A very small proportion of people with MS exhibit inappropriate behavior such as sexual disinhibition. This type of behavior is thought to result in part from MS-related damage to the normal inhibitory functions of the brain. These behaviors may also reflect very poor judgment related to cognitive dysfunction caused by MS. Such behavior is generally beyond the control of the individual and is not a sign of moral weakness or sociopathic tendencies.
The treatment of these problems is complex. The person with MS may require some form of psychiatric medication, perhaps along with psychotherapy. Family members will probably need supportive counseling since these behaviors are often shocking and disruptive. In some cases, the affected individual may require supervision to prevent the manifestation of the behaviors in question.
Help is Available
MS is associated with a wide variety of emotional experiences and changes. Professional counseling and participating in a support group may be helpful in coping with the emotional aspects of MS. In many cases, the right psychotropic medication can make the difference between an intolerable vs. a happy and productive existence. An active lifestyle can also be helpful. As much as possible, this should include activities the person enjoyed before being diagnosed with MS, as well as new interests suited to the physical changes the individual is experiencing. A nurse, social worker, psychologist, or other therapist may provide helpful guidelines. The local chapter of the National MS Society can provide a variety of resources to assist people in dealing with the emotional aspects of MS. Chapters provide a wide variety of support groups, as well as workshops and other programs geared to maintaining the quality of life of persons with MS. The chapters are also excellent sources of referral to community resources that can make a crucial difference.
For Healthcare Professionals
Holland NJ, Halper J (eds.). Multiple Sclerosis: A Self-Care Guide to Wellness (2nd ed.). New York: Demos Medical Publishing, 2005.
—Ch. 16 Coping and Stress Management
Kalb R. (ed.) Multiple Sclerosis: The Questions You Have; The Answers You Need (3rd ed.). New York: Demos Medical Publishing, 2004.
—Ch. 11 Stress and Emotional Issues
Kalb R. (ed.). Multiple Sclerosis: A Guide for Families (3rd ed.). New York: Demos Medical Publishing, 2005.
—Ch. 2 Emotional and Cognitive Issues
Schapiro R. Managing the Symptoms of Multiple Sclerosis (5th ed.). New York: Demos Medical Publishing, 2007.
—Ch. 22 Adapting to Multiple Sclerosis