How to help others ‘see’ your symptoms—and how they affect you.
by Vicky Uhland
Ann Borsellino was working as a high school teacher in Mamaroneck, New York, in 1997 when she was diagnosed with multiple sclerosis. Her initial symptoms included constant numbness or tingling throughout the right side of her body, cognitive issues and depression. For Borsellino, these symptoms felt debilitating. But many of her family, friends and acquaintances barely noticed.
“People couldn’t see what my body was dealing with,” Borsellino says. “Many times early on in my disease, I wished I had something people could see because then they would know what I was going through.”
Like Borsellino, many people with MS have symptoms that aren’t readily apparent to others. These “invisible” symptoms can include fatigue, pain, cognitive challenges, mood changes, numbness or tingling, heat sensitivity, vision changes, balance and coordination problems, and bladder and bowel control issues.
And like Borsellino, many people living with MS struggle with how to explain these symptoms to people who know they have MS but may not understand how the disease manifests.
Invisible symptoms can play havoc with your relationships, says clinical psychologist Peggy Crawford, PhD. “Because you don’t fit their definition of ‘sick,’ others are apt to over- or underestimate your symptoms.” And that can result in misunderstandings, resentment and a feeling that you’re not getting enough support.
That’s why Dr. Crawford and other MS experts stress the importance of communicating your symptoms in ways that others can understand. This is often not an easy task, but a variety of resources are available to help you.