Multiple Sclerosis is a chronic neurological disorder resulting in lesions in the brain and spinal cord. It is an auto-immune disorder, in which the immune system attacks the myelin coating around nerves. As a result, signals from the brain to the body are interrupted. A wide range of physical and cognitive symptoms can result, depending on the location of the lesions. The wide range of potential symptoms makes diagnosis difficult; MRI scans provide the most definitive diagnoses. The disease affects more women than men, generally beginning between the ages of 20 and 40. Common symptoms include numbness and tingling in the extremities, visual problems, difficulty with gait and balance, muscle weakness, spasticity, tremors, bowel and bladder problems, sensitivity to heat, memory deficits, and fatigue. It is normal to have an emotional reaction to receiving a diagnosis of MS, and to the ongoing challenge of having a chronic illness that affects a person and their family. Emotional problems can also arise as a direct result of brain lesions. Some people have periodic MS symptoms followed by periods of remission, while others develop a progressive form of MS, becoming steadily worse with no clear remissions. Treatment of MS can aim to slow the progression of the disease itself, or may involve efforts to relieve specific symptoms.
When diagnosed with MS, people often go through understandable emotional stages, including denial, anxiety, anger, and guilt. These feelings often present lifelong challenges. When first diagnosed, the person with MS faces many dilemmas. What if anything do you tell your family, friends, co-workers, or bosses? How will MS affect your future as an employee, spouse, or parent? When struggling to learn about the disease, how do you get others to understand? “But you look so good!” really is a common response. How do you make the difficult treatment decisions facing you? How do you yourself understand this disease? Is it bad luck, punishment from God, a sign of weakness, an opportunity? How do you accept having an incurable disease when modern science and technology have made so many advances?
Anxiety almost always accompanies MS. So much is unpredictable: the prognosis, the type of symptoms one might get, the response you will have to treatments that helps some but not all. People worry about how the disease will change their self-image and their relationships with significant others. Money is often a worry. How will you pay for medical care, equipment like walkers or wheelchairs, medication, paid caregivers? Will you be able to continue to earn the same salary? Can you count on being able to do your job in the future?
Depression is also a nearly-inevitable problem for those with MS. There are so many losses. Certain physical and mental abilities may decline, accompanied by a general feeling of losing control. Your sense of independence is threatened. You may fear the loss of relationships, even your marriage, if you become dependent in unfamiliar ways. How can you learn to like the new you?
MS can also stimulate great psychological growth in people. Those with MS may learn new respect for their own internal strength and coping ability. They may grow interpersonally by getting more comfortable asking for and accepting help. They may learn new job skills, new ways to move around, and a deeper confidence that they can cope with any challenge that comes their way.
In helping those with MS, it is important to be able to recognize depression and direct people to appropriate treatment. Depressive symptoms may include changes in eating, weight, and sleep. Pessimistic thinking, sadness, tearful episodes, guilt, irritability, a loss of interest in previously-enjoyed activities, fatigue, physical pain, and concentration problems are other signs of depression. Of course, some of these symptoms are also symptoms of MS itself. A combination of anti-depressant medication, cognitive-behavioral psychotherapy, and lifestyle changes such as exercise can help. Neurologists and primary care physicians may be comfortable prescribing medication for depression, or they might suggest a psychiatrist.
Suicidal thinking is definitely more common for those with MS. You should feel comfortable asking about suicidal thoughts if an MS patient has had a significant physical, emotional, or interpersonal setback. To respond wisely to suicidal thoughts, you must feel comfortable asking the patient some difficult questions. Have you thought about suicide? Have you tried in the past? Has anyone in your family ever killed themselves? Have you thought out specific plans for taking your own life? Are there guns, other weapons, or lethal dosages of medications accessible? Have you felt more hopeless recently? What seemingly-overwhelming problems or apparently-intolerable pain would be removed by suicide? Can the patient discuss positive methods of coping with problems? Are they socially isolated? Have they acted secretively, shown a sudden increase in energy, or acted to get affairs and paperwork in order? Those helping people with MS should know how to get in touch with health professionals treating the patient. They should also know how to contact the local community mental health centers, and know how to activate emergency mental health units and make use of involuntary commitment procedures if necessary.