Multiple sclerosis is in the spotlight this week after 26-year-old Jack Osbourne, a new dad, revealed he is battling the disease. Less well-known are the psychological challenges facing both the patient and his loved ones in the wake of such a diagnosis.
Osbourne's mother, Sharon Osbourne, host of "America's Got Talent," offered a hint of this when she broke down this week while discussing her son's illness on "The Talk." (Have some tissues handy if you watch it.)
"The first thing people have to do is let go of that picture they had of themselves without MS, and begin to think of themselves in this new way," said clinical psychologist Dr. Rosalind Kalb of the National Multiple Sclerosis Society, where she's vice president of the Professional Resource Center. "It's a healthy, normal grieving process. And it will get repeated every single time there's a change" in the progress of the disease.
It's not just the patient who experiences this, she told the Los Angeles Times.
"Family members, friends, everyone who cares about that person has to process those feelings as well," Kalb said. She's also the author of several books on MS, including the recently published "MS for Dummies." "We want people to know about this and expect it, so that they don't feel bad about taking a little time to deal with all the feelings that are going to come up ... anxiety, shock, fear, sadness."
MS is an autoimmune disease in which the body's own immune system turns on the body, specifically the brain. The disease affects more than 400,000 people in the United States and 2.5 million worldwide, according to the National MS Society.
Unlike many diseases, which are easily diagnosed and require swift and immediate medical attention, MS can be tricky. Diagnosis often involves a process of ruling out other illnesses, and determining a course of treatment can be equally slow.
As a result, many patients diagnosed with MS find themselves facing a series of complex psychological hurdles before they ever get down to the business of treatment, Kalb said.
Moreover, MS is a disease of uncertainty. Everyone does not experience the same symptoms. Everyone does not experience the same treatments. (Some patients have symptoms that are so minor that they involve little more than monitoring.) And everyone's illness does not progress in the same way.
Some MS patients live long lives with little more than tingling and fatigue. In other patients, the disease moves swiftly, stripping a patient of mobility, experts say.
And then there is the fact that the diagnosis comes as a shock to most patients.
Kalb says human beings have a personal self-picture, an image that is developed over a lifetime and made up of many pieces. Illness can shred that picture. The patient must put the pieces back together to create a new self-image, she said, "and you have to figure out where the diagnosis fits in to the picture of yourself."
Many patients and their families could benefit from a counselor's help in smoothing the way toward productive conversations about how the illness is affecting them, Kalb said. She also suggested that patients and their loved ones contact the National Multiple Sclerosis Society for assistance.