Think outside yourself
It’s also a good idea to tell people how they can help you manage your symptoms. “That’s empowering for everyone,” Dr. Miller says.
Dr. Crawford suggests modifying the approach a bit with casual acquaintances. For example, if you don’t want to get into an explanation of how your MS makes you feel fatigued in the afternoon, just offer to do the carpool in the morning rather than after school. If you have memory loss, simply saying, “I’m trying to think of a word,” can encourage people to help without going into details.
Sometimes you may have to repeat yourself, Borsellino warns, because people don’t always remember how your invisible symptoms affect you. “My secretary kept forgetting that because of my symptoms on my right side, it can be hard for me to write. I had to keep asking her to take notes for me,” she says. “I’ve found that rather than getting annoyed, humor helps a lot in situations like that.”
This can also be true with cognitive challenges. Dr. Miller says building habits and routines with your family, like always keeping the house keys in the same place, can spare all of you the frustration of asking and answering the same questions repeatedly.
Remember that symptoms may also affect your loved ones. For instance, Dr. Crawford says family or friends may be resentful when you have to cancel activities due to fatigue. So allow them to air their feelings, too, about how symptoms affect their lives. “Once a week, make sure to check in with your family and close friends,” she says. “People are often scared their loved ones will get sicker, so they’re looking for reassurances that you’re taking care of yourself.”