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.
Once you settle on a basic explanation, write down the points, find someone you trust, and practice. Then practice again!
3. Be prepared. For anything. “Most people either think you are getting ready to die or you’re very sick,” Loven says. While MS may be debilitating and sometimes disabling, that’s not always the case. Still, it is a very serious disease and some people react very emotionally.
A few years back, I had to let someone go from the department I ran. Our company’s HR person attended that meeting to ensure it was handled properly and to offer moral support. With her she brought three glasses of water, one for her, one for me and one for the person I was about to fire. Her reason? “Drinking water helps people control crying,” the HR manager told me. Though crying is a perfectly human response, it could derail the conversation and make a tough conversation even more difficult.
For many reasons, some people you tell may simply not want to hear — or believe — what you’re sharing with them. According to “Disclosure: The Basic Facts,” a brochure from the National Multiple Sclerosis Society, “Our society prizes health and is often not tolerant of difference and imperfection.” Some people won’t be able to handle the truth. Be patient with them and when appropriate, try to share simple examples of how MS affects you and your life to further enlighten them.
Some won’t ever understand, no matter what you say or do. Sometimes explaining won’t be worth your time or effort. Remember, just because you have MS doesn’t mean you don’t have a life to live. So keep moving … and keep living!
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.