In addition to its physical symptoms, MS may have profound emotional consequences. 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 corticosteroids — can also have significant effects on the emotions.
In the face of MS, people may tend to focus primarily on their physical health and neglect their emotional health—which is an essential component of overall health and wellness. Read more from the MS International Federation's MS in Focus.
The changes caused by MS can be negative or positive, sudden or gradual, permanent or temporary, predictable or unexpected. How to cope with MS-related changes comfortably and effectively is the subject of the workbook Living Well with MS: Coping with Change. Like other workbooks in the Living Well series, Coping with Change is designed to be used in a variety of ways: you can use it alone, as a guide for personal reflection and problem-solving, or as the basis of discussion with members of your family or your self-help group.
People with MS may experience losses—for example of the ability to work, to walk or to engage in certain leisure activities—and 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.
is more persistent and unremitting, with symptoms lasting at least two weeks and sometimes up to several months.
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.
“Depression” is a term that people apply to a wide variety of emotional states, from feeling down for a few hours on a given day to severe clinical depression that may last for several months. Depression in its various forms is one of the most common symptoms of MS.
The most effective treatment for depression is a combination of psychotherapy and antidepressant medication. Exercise has also been shown to enhance mood. Although support groups may be helpful for less severe depressive symptoms and generalized distress, they are no substitute for intensive clinical treatment.
If you have thoughts of harming yourself, or feel you are at risk of hurting yourself or someone else, contact the National Crisis Hotline (1-800-273-TALK (8255) or text "ANSWER" to 839863). The hotline is available 24 hours a day.
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.
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.
Don't try to “avoid stress,” as it's a nearly impossible task given the realities of life. Don't feel guilty because you think you may have “created stress” in another person’s life. Stress is part of the reality of living; rather than trying to avoid it, learn how 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 can cause significant anxiety, distress anger, and frustration from the moment of its very first symptoms; the uncertainty and unpredictability associated with MS is one of its most distressing aspects. Loss of functions and altered life circumstances caused by the disease can be 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" (see Momentum article, The shifting tide of mood in MS) may manifest as rapid and generally unpredictable changes in emotions. Family members may complain about frequent bouts of anger or irritability.
It is unclear if emotional lability 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®).
Approximately ten percent of people with MS experience uncontrollable episodes of laughing and/or crying — pseudobulbar affect (PBA) — that are unpredictable and seem to have little or no relationship to actual events or the person's emotions. A person may sob uncontrollably without feeling sad, or laugh inappropriately in a situation that isn't funny. These changes are thought to result from lesions 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 been used over the years to control PBA. In 2010, Nuedexta™ was approved by the US Food and Drug Administration (FDA) to treat pseudobulbar affect in MS and other neurologic disorders. This medication, which is taken by mouth once a day, is a combination of dextromethorphan and an enzyme inhibitor to sustain a therapeutic level of dextromethorphan in the body.
Counseling and talk therapy have not been shown to be effective treatments for PBA.
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.