Psychosocial Issues

MS profoundly affects people with the disease and those with whom they live and work. The effects of MS last a lifetime and range from minor interruptions in daily routines to complete disruption of everyday life. In early relapsing disease, it is important for healthcare providers to keep in mind that there are no definitive stages of adaptation to MS. Each MS attack and every new symptom requires the person with MS to begin the process of adaptation anew. As a result, the primary goal of intervention is not for individuals to reach a static point of acceptance. Rather, a more realistic goal is for the person with MS to learn how to adapt to the presence of MS in his or her life.

For many patients, the second attack after diagnosis is the most emotionally devastating. When a period of remission occurs following diagnosis, the patient may conclude that the diagnosis was in error or the disease is something that he or she has overcome. The second attack often causes the patient to confront the reality of the diagnosis and its implications. Healthcare professionals should be especially alert to their patients’ emotional needs at this time. In addition, the recent focus on early intervention to attempt to slow disease progression is at odds with denial and other emotional defenses that most individuals call upon to cope with a chronic disease such as MS. Many individuals with MS look quite healthy and must confront issues such as responding to others who tell them "how good they look", or express lack of understanding regarding physical and cognitive limitations the person with MS may be experiencing.


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The second attack of MS symptoms after diagnosis usually has little psychological impact on people with MS.
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Health care professionals need to be alert to the cognitive and emotional changes that can occur at any point in the illness, even when physical changes aren’t visible. Cognitive changes can significantly influence a patient’s ability to hear and understand what healthcare providers are saying, and develop the kinds of problem-solving and self-management skills that are needed to cope with MS.

As impairments begin to accumulate and the effects of disability begin to affect more areas of daily life, patients with MS may seek to find meaning in their illness. Depending on the individual patient, he or she may view the inability to control MS as a sign of personal failure, a sign of personal weakness, or a punishment for previous actions. As the disease continues to progress, the patient may begin to examine and question the treatment plan. For example, if the patient has no symptomatic relief and symptoms are becoming more severe, it becomes harder to self-inject medications that may or may not alter the progression of the disease. As patients begin to struggle with these challenges, many are tempted to discard standard treatment and try miracle cures. It is helpful at this stage for healthcare professionals to be alert to expressions of fear, frustration, and despair as the patient confronts the reality of MS progression.

The progression of MS symptoms means progressive loss of an individual’s abilities, activities, and important life roles. Increasing disability impacts the performance of roles both at home and at work. An individual who is a primary breadwinner may need to give up working. A homemaker may be unable to continue to manage household tasks. Individuals facing such significant role changes need time to grieve and need support in establishing new goals that are realistic and satisfying.

As the patient becomes increasingly dependent on assistive devices, personal aids and other forms of outside assistance, he or she must find new ways to think about exerting independence and control in everyday life. Counseling can be particularly helpful at this phase, aimed at supporting the person’s efforts to deal with painful feelings and developing satisfying and meaningful personal goals. The potential presence of cognitive impairment is a key variable in all phases of MS development. The person who is experiencing cognitive impairment will have increased difficulty in identifying and implementing changes that need to be made and negotiating these changes with family members and employers. In addition, the person with MS who is experiencing depression, will also have increased difficulty making changes. Healthcare providers need to monitor cognitive and emotional functions carefully, providing prompt diagnosis and treatment as appropriate.


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Cognitive impairment can interfere with the person’s ability to implement changes that can affect functioning.
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As a chronic and progressive disease, MS has a profound effect on the patient’s family and on family relationships. Most families of a person with MS will be living with the disease and its effects for several decades. MS is a drain on important family resources, including money, time and energy. In addition, MS can require significant role changes within the family, and can disrupt everyday patterns of customary family life.

Persons with MS experience many emotions as they cope with the effects of the disease and it’s disabling consequences. The patient may experience significant feelings of grief over the course of the disease. Every new symptom represents a loss of self or personal identity, autonomy and control, or a particular skill or ability. Anxiety is a common response to the unpredictability of MS. From one day to the next, as well as from month to month or year to year, patients don’t know what the future holds for them. Family members share a similar burden. Resentment is another common response to the unpredictability of MS and to progressive loss of autonomy. Although patients and families may experience feelings of anger and frustration, healthcare providers can help them learn how to express angry feelings in a constructive way. Even when people with MS feel angry toward their significant others for various reasons, they may be afraid to express negative feelings for fear of alienating their partner or caregivers. Patients may also experience guilt, due to their inability to fulfill roles and obligations and may worry that they are letting others down by not carrying their own weight. Mood swings are also common in MS and can be as disruptive for patients and families as physical impairments.


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The unpredictability of the course of MS is a major challenge for both patients and families.
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Depression, including major depressive episodes and less severe dysphoric states, are common in MS. Following a diagnosis of MS, the lifetime prevalence of major depression increases from 15% (similar to that of the general population) to approximately 50%. Depression is more common in patients with MS than among other chronic conditions that are equally disabling. Possible causes of MS related depression include increased disease activity, neuropathologic changes in areas of the brain related to affective states, neuroendocrine or psychoneuroimmunologic changes, reactions to life changes, and medication side effects, especially those side effects that are the result of steroid therapy.

People with MS should be screened for depression on a regular basis. Suicidal ideation, intent, and action, which are associated with depression, are more common in MS than in the general population. Depression is treated most effectively with a combination of psychotherapy and antidepressant drugs. It should be kept in mind that antidepressant medications tend to interfere with sexual response and may therefore add to the individual’s distress level.


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Depression and suicidal ideation are less common in people with MS than in people with other chronic disabling conditions.
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