Imagine you are living your life the way you think it should be lived. Perhaps you're married, with a child or two, your career is going fine. Maybe you run 3 or 4 times a week. You serve on a board for a charitable group. You volunteer as a scout leader. You sometimes eat too much, maybe have a cigar once in a while, or watch fluff on TV. Normal life.
One day, you trip over seemingly nothing. A day or two later, your fingers let things slide to the floor. You shake it off. God, but you're tired. A few months later, your legs completely go out from under you. Now you get to the doctor.
The doc does some tests and tells you it's MS. Do you tell anyone? Maybe you take a few days off from work. Your legs come back to you and you carry on as normal, but you know you are anything but normal. How do you tell people you have MS? You look normal.
Everyone decides at some point to tell some people and not others. Perhaps you tell your wife, but hide it from the kids. Maybe your best friend, but not your parents. Maybe you tell everyone. The reasons for keeping it to yourself or telling others are as varied as the number of people with MS. David Lander, Squiggy on Laverne and Shirley, told no one outside of his family for almost 20 years. He knew there were rumours circulating that he had a drinking problem, because he walked like a drunk. But he would rather people think he was a drunk than that he might have a disability. He was fearful that he wouldn't get work as an actor. ( Read his book )
Many people fear losing their job or the medical insurance they receive with their job. Let's face it, it's expensive to be disabled. And it can be lonely as well. The disabled have a harder time getting around and sometimes a spur of the moment trip for a coffee with friends just can't happen. If you need assistance getting dressed and out of the house, then having to arrange transportation for yourself and a wheelchair or scooter, you need to be organized and have plans made well in advance. You can't just pop out for a cup of joe. As a result, if you are not working, your social life can become pretty thin. Even if you are working, a social life can still be difficult. Fatigue can make you want to lie down in the middle of the grocery store to rest. So if you're going out after work, you really have to calculate your energy levels.
And when you tell people you have MS, you have to deal with their insecurities as well as your own. Some people don't know how to handle it. That's fine actually, because you may still be learning to handle it yourself, and if they're good people they'll want you to help each other. Some of those people, though, might decide to distance themselves from you beause they're too afraid.
Do you tell your folks? Depends on your folks of course and again, like friends, some handle it better than others. Some folks and family members rally around and join support groups and do the walks and raise money. They take action. Others wait to be asked for help. Others completely ignore the fact.
And some people bury their head in the sand and ignore it for as long as they can.
Personally, I never understood not telling people, until I'd had MS for a few months. And I couldn't understand not researching the disease. But the more I knew about it, the more I understood why some people keep it to themselves. I don't tell everyone I meet that I have MS, but it's not a secret either. I've mentioned it in passing a few times on the air when I've talked about the upcoming MS Walk or the Bike Tour and since I am the go-to person for local media outlets when they need a soundbite or person with MS to comment on a new study, I am no stranger to either the papers or TV.
Some folks feel the need to keep their diagnosis to themselves. I cannot. There's too much that needs to be done for me to keep quiet.