Face it: Understanding MS isn’t easy — even if you have it. There’s no known cause, no cure, no predictability in progression, and while there are common symptoms and manifestations, they affect everyone differently. Some symptoms come and go with no rhyme or reason and often those who have MS show no outward signs of the disease.
All of this can make it hard to explain this potentially debilitating disease to other people in your life — if you want to disclose that you have it at all (and there are legitimate reasons to be hesitant about doing so). Further compounding the challenge, many people know little about MS and may be prone to confusing it with other scary afflictions (and some people simply don’t want to understand scary afflictions). Just sharing that you have MS may be a bombshell in and of itself.
But, sooner or later, it may be in your best interest to help others understand. Here are a few tips to help make that happen:
1. Know your audience. For starters, lots of people know very little about MS. After all, there are about 7.6 billion people in the world. According to the American Academy of Neurology, about 2.3 million of them have MS. So chances are good that you’re going to have to some explaining to do.
Think about who you are telling what, and if possible, the best way to share that information. Some people will respond better to a brochure, others to a video or a website, still others may want to accompany you to a seminar. There are even specially created videos, brochures and newsletters for explaining MS to the children in your life — don’t be surprised if they’re just as useful with adults, too.
2. Easy does it. “I could get super scientific and describe demyelination, but most people don’t have the attention span for that,” MS patient Julie Loven says in an article at Healthline.com.
Find and use a basic explanation, and then wait to see if the person you’re sharing with asks questions about the disease before diving any deeper. Here’s mine: “The central nervous system is like a system of electrical cords that allows my brain to send messages to my nerves, which control my body and its functions. A fatty tissue called myelin covers those cords like insulation and ensures complete message transmission. For unknown reasons, my body’s immune system is attacking the myelin, which means parts of my body don’t function properly anymore.”
Though this video was made for children, the explanation is straightforward — and pretty endearing, too.
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