Mimi Mosher knows what an emotional bombshell it is to be diagnosed with multiple sclerosis (MS). She was a 24-year-old art student and had been experiencing blurred vision, difficulty balancing, and strange sensations in her legs. When her doctor said she had the neurological disease, she locked herself in the bathroom. “I freaked out and was trying to wrap my mind around what he told me,” she recalled.
Potentially disabling and very unpredictable, MS can take a devastating psychological toll. “It’s a really mysterious chronic condition. No one knows where it’s going to go and what it’s going to do,” said Mosher, who’s now 51. “You have to plan for the worst and hope for the best, which seems like a dismal outlook sometimes.”
MS involves an immune system attack that damages myelin, the protective layer that covers nerve fibers, and disrupts nerve signal transmissions. The symptoms and their severity vary but can include numbness, weakness, tingling or pain in the limbs, tremors, problems with coordination, and impaired vision. Symptoms may come in waves, with periods of remission.
The disease, typically diagnosed in people between the ages of 20 and 40, can cause permanent neurological damage even in its early stages. Mosher was eventually declared legally blind and now needs to use a wheelchair.
“I felt shame for not being able to be the way that I used to be, for having to use all this equipment to get around.” said Mosher. “I didn’t feel like a whole person anymore.”
Being diagnosed with MS is like “a death of the perception of being a healthy person,” said Adam Kaplin, MD, PhD, chief psychiatric consultant for the Johns Hopkins Multiple Sclerosis and Transverse Myelitis Centers. “People’s coping responses can get overwhelmed.”
Mosher remembers feeling angry and guilty, and blamed herself for not being “smart enough, strong enough, or clever enough to overcome this.” The emotional strain extends to loved ones and caregivers. After 30 years of marriage, Mosher and her husband divorced last year – something she blames on her disease.
“It affects every relationship around you,” she said. “My husband had my back through all of it and was stellar whenever I needed him, but it just became too much.”
About 25 percent of people with MS suffer from clinical depression, which can be brought on by stress associated with the disease or actual nerve damage affecting mood. Medications used to treat MS relapses, such as corticosteroids, also effect emotions. As Dr. Kaplin points out, depression in a person with MS can be managed with therapy or medication, but people need to recognize they’re depressed and want treatment.
According to the National Multiple Sclerosis Society, 50 percent of people with MS develop cognitive problems such as memory lapses or difficulty concentrating. Cognitive changes are more common in advanced stages of the disease, but they can occur at any time. The threat of cognitive problems can be very scary for people with MS.
“People’s fears are different depending on what they value,” said Rosalind Kalb, PhD, vice president of clinical programs at the National Multiple Sclerosis Society. “If you’re a teacher or attorney you know the core of your being depends on your ability to think well, fast, and effectively. They can teach or be a lawyer sitting in a wheelchair, but the mind they can’t control.”
Kaplin and Kalb agree that finding something meaningful to focus one’s energy on can be an important part of any MS treatment plan. For Mosher, that meant continuing her artwork.
“I still paint and draw quite a bit,” she said. “Fortunately I’ve been able to sell some things and have some pieces put up in galleries. That saved me, and helped me work through a lot of stuff.”
No matter how physically and psychologically challenging MS can be, Mosher said, “you have to pull some kind of confidence out of the core of your being and do what you need to do to make things work.”