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.
Grief over any kind of loss is a normal and healthy process. People with MS grieve over changes caused by the disease – beginning with a new diagnosis that alters their life and their self-image – and again whenever the disease causes a significant loss or change —for example of the ability to work, to walk or to engage in certain leisure activities. The grieving process is the first step to learning how to adapt to those changes in in one’s life and move forward. Given the many symptoms and changes that MS can cause, a person with MS can expect the normal grieving process to ebb and flow over time.
Grief can sometimes be difficult to distinguish from depression
. However, they differ in several ways:
- Grief over a recent change or loss is generally time-limited and resolves on its own. Clinical depression is more persistent and unremitting, with symptoms lasting at least two weeks and sometimes up to several months.
- A person experiencing grief may at times be able to focus on life’s activities and gain enjoyment from them, while a person who is depressed may not.
- Although grief generally resolves on its own without treatment, counseling, self-help groups, as well an understanding and supportive environment can help. Depression requires treatment by a mental health professional. Self-help groups and other types of emotional support are important but not sufficient.
The most common emotional changes in MS include:
- grief (and sadness): natural reactions to the changes and/or losses that MS can cause. These feelings will likely ebb and flow over the course of the disease.
- worry, fear, moodiness, irritability and anxiety: normal reactions in the face of unpredictability; anyone can become irritable and anxious when faced with difficult challenges.
- depression: one of the most common symptoms of MS.
Depression, persistent anxiety and extreme irritability are not natural or inevitable, even in people with MS. However, they are very common. These changes require treatment just like any of the physical symptoms of the disease; mood changes can be a significant source of pain and distress in and of themselves.
“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.
*Depression is a major risk factor for suicide. The primary reason why the risk of suicide among people with MS is unacceptably high is undiagnosed and under-treated depression.
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.
You may also reach out to the nationwide Crisis Text Line by texting 741741 from anywhere in the US, anytime, about any type of crisis or painful emotion, for which you need support. Crisis Text Line Counselors are trained to bring texters from a hot moment to a cool calm, and to stay safe and healthy using effective active listening and collaborative problem solving – all through text message.
Aside from the normal stresses of everyday life, MS creates stresses of its own. Many people with MS say they experience more symptoms during stressful times; when the stress lessens, their symptoms seem less severe.
- 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.
Chronic stress weakens the immune system and increases the risk for a number of illnesses including heart disease, diabetes, and depression. Most research studies about the effects of stress on MS have been inconclusive, but one recent study by Dr. David Mohr at the University of California, San Francisco, found significant increases in MS relapses following stressful life events. Learn more about stress management strategies online
Researchers have also found that people who experience a moderate amount of hardship throughout their lives show greater well-being and resilience. Resilience is commonly described as the ability to bounce back from difficult circumstances -- to find happiness and life satisfaction despite challenges. Learn more about resilience and how to increase resilience in the face of MS-related challenges
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. In fact, anxiety is at least as common in MS as depression. 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. For severe anxiety, medication may also be needed to obtain relief.
Moodiness and irritability
Moodiness and irritability may manifest as rapid and generally unpredictable changes in emotions. Family members may complain about frequent bouts of anger or irritability.
The increase in irritability and moodiness can have multiple causes.
- Many people who are depressed become irritable or moody.
- Changes in the brain may be responsible.
- The challenges of life with MS can make many people feel irritable.
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.
A correct diagnosis of the problem is essential in order identify the right treatment. While an antidepressant may be the optimal treatment if the depression is the cause, a mood stabilizing medication such as valproic acid (Depakote) – an anticonvulsant medication that is used in low doses to stability mood – may help with severe mood shifts and emotional outbursts.
MS can affect the expression of emotions.
- Pseudobulbar affect (PBA): experienced by approximately 10 percent of people with MS. Uncontrollable episodes of laughing and/or crying (out of proportion or unrelated to how the person is actually feeling) which may appear to others as depression, but the two conditions are unrelated. The condition is treatable. Nuedexta™ is approved to treat pseudobulbar affect in MS and other neurologic disorders. This medication 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.
- Euphoria: experienced by a small proportion of people with more advanced MS or significant cognitive changes. A person with euphoria appears to be unrealistically happy, unconcerned about problems, and out of touch with the reality of the situation. This expression of happiness is more related to impairment in cognition than to a mood change.
MS can occasionally cause inappropriate behavior
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.