Author Kenneth Bandler, a multiple sclerosis patient and advocate, is a member of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis Advisory Board
“What are you doing here?” Andrea and I asked each other when we met in the waiting area at Mount Sinai’s Corinne Goldsmith Dickinson Center for Multiple Sclerosis. She was a volunteer at the American Jewish Committee (AJC), where I was director of media relations.
My heart sank at this surprise encounter in June 2004. I had managed to keep my multiple sclerosis (MS) a secret for years. Quickly adjusting, I said to her that a few days earlier I had told AJC’s CEO about my MS. Luckily, Andrea and I had not crossed paths at the Center earlier. It might have swayed me to disclose sooner than I desired.
Concealing MS is not stress-free. I first came to the Center in May 2003, shortly after the second MRI in my life revealed new brain lesions, showing the disease had progressed since my first MRI and diagnosis in 1990. I needed to see an MS neurologist.
I chose the Center for several reasons. It was convenient to my residence and workplace. I was able to get an appointment with Fred Lublin, MD, the Center’s director. And I noticed a social worker was on the Center staff. I thought she might come in handy as I embarked on a new chapter in my MS journey.
After an MS diagnosis, finding trusted individuals to speak with for help in navigating this unpredictable disease is critical in averting loneliness. For many, one’s immediate family—spouse, parents, siblings—are the first line of assistance. Others find comfort in MS support groups.
A workplace is a very different situation. For comradery some people share information about family, vacations, and other interests, but certainly they are not obliged to divulge a health condition.
With my relapsing-remitting MS, maintaining the secret was not difficult, as in this most common form of the disease, there are periods of remission and symptoms disappear. I looked fine to my colleagues, and I did not allow MS to interfere with my work production.
I was very fortunate that the Center’s comprehensive care includes a social worker whose unparalleled guidance was crucial in giving me the self-confidence to tell my secret.
But the reality was that only I knew how I felt and that I needed to manage exacerbations. I thought about telling my boss so that he would be aware of my MS in case a debilitating attack struck me at the office or while travelling for work. However, I knew you cannot take it back if sharing did not go well. I feared the unknown of what the reaction would be. Why take that risk when my job was going well?
Enter the social worker. Through confidential one-on-one conversations, a social worker familiar with MS helps you navigate life challenges related to the disease. The social worker and I established a very good rapport. Our conversations encouraged my thinking about the pros and cons of disclosing. Their questions about the demands of my media relations work for a global advocacy organization, and my relationship with the CEO, helped me focus on how I saw MS affecting my job.
Our discussions helped me recognize what I already knew deep inside—that it would be best for me to tell my boss, and it would be safe to take that risk by disclosing on my terms. Deciding to divulge was huge, but how and when to do it still were big hurdles. Several times over a period of months I told my social worker that I was ready, but at the last moment, as I sat with my boss, I hesitated. The timing and setting did not feel right.
Another stress factor weighing on my mind was an oped article I had written about my MS. Center staff encouraged me to publish it, but how could I without telling my employer I have MS?
One Friday evening, in late May 2004, I walked into the CEO’s office and told him I have MS. He was stunned to learn about my disease, and that I had kept it a secret. I gave him my article to read over the weekend, and Monday morning he encouraged me to publish it with my AJC title. It appeared in the International Herald Tribune under the headline “The loneliness of coping with MS.”
The psychological burden of constantly thinking about whether or not to disclose had been lifted. Relieved of the stress of concealing my MS I continued to pursue an enjoyable, successful career heading AJC media relations for more than 25 years.
I was very fortunate that the Center’s comprehensive care includes a social worker whose unparalleled guidance was crucial in giving me the self-confidence to tell my secret.
By Kenneth Bandler, a multiple sclerosis patient, advocate, and member of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis Advisory Board