Counteracting the judgments
Along with professional help, there are several other approaches you can take to help your friends, family and acquaintances understand how your invisible symptoms affect you.
First of all, Drs. Crawford and Miller advise never using your MS as an excuse to get out of something you just simply don’t want to do. Like the boy who cried wolf, if people discover your prevarication, they’ll be less apt to believe you the next time you really can’t do something because of a symptom flare-up.
It’s also important to use examples when discussing your symptoms. “For instance, when people with MS tell someone they’re fatigued, they often get responses like, ‘Oh, I get tired, too,’” Dr. Crawford says. To help them understand MS fatigue is different, you could use phrases like “my legs feel heavy” or “lifting my hair dryer feels like I’m lifting a 25-pound weight.” For vision issues, she suggests doing something as simple as putting Vaseline on someone’s glasses to show them what blurred vision is like.
Dr. Miller notes that fatigue and cognition problems can be the greatest source of frustration for your loved ones. “Both symptoms can be interpreted as you’re giving up if you don’t explain them with regard to your immediate circumstances.”
For example, Reyes-Velarde gives specifics to help her husband understand how her cognition and fatigue issues are affecting her at a specific time. “I tell him things like, ‘When I was driving today, I got so tired I couldn’t find my way home. And I couldn’t focus enough to understand what the woman was saying on the GPS.’ ”
But sometimes, disclosing these types of details can make you feel uncomfortable.
Dr. Miller had a patient who would just say no when her family wanted her to join them on a visit to a friend, rather than admit her fear that she might have difficulty climbing the steps at the friend’s house. Because she didn’t explain this, her family felt like she was lazy. This spurred the woman to talk to Dr. Miller about how to build a vocabulary to describe her symptoms, and say no to things she didn’t want to do, in a way that also made her feel comfortable.
Sometimes that might include nonverbal cues—especially if you’re tired of discussing your symptoms. “I had one patient who put different colored Post-its on the kitchen door so her kids would know what to expect when they came home from school,” Dr. Crawford says. “A blue Post-it meant she was having a good day.
“You can have a shorthand about what’s going on in your life without talking about it for 45 minutes,” she adds. “For instance, you could tell your partner, ‘Today I feel more fatigued, and I may need you to stop at the grocery, but I will do my best to avoid that.’ That way they know what to expect, and it doesn’t look like you’re slacking off.”