Explaining MS When Others Can t or Won t Understand Everyday Health

Explaining MS When Others Can t or Won t Understand Everyday Health

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Explaining MS When Others Can t or Won t Understand

By Trevis GleasonFor Life With Multiple SclerosisReviewed: September 14, 2016Everyday Health BlogsFact-CheckedI miss much from my former career as a chef: I was good at my job, I was respected for my work, and I associated with some of the best people I’ve ever come into contact with.I’ve said before that it's by remembering the skills from our “former” lives and applying them to multiple sclerosis (MS) that we can most successfully live with MS. I was thinking of one particular lesson I learned and passed along to my staff that I thought might be helpful to some who are having a difficult time with others who persist in misunderstanding MS.

Start With a Clear Explanation

In the middle of a long-term consulting gig, a woman who’d been hired a few weeks after I started came to me with a professional question. “How is it that you get so much out of this kitchen staff, yet you never raise your voice?” she asked. She’d worked in many restaurants and under many chefs. They must have all been screamers (yes, there are still a few of those left in my former industry). I explained my management philosophy to her and realized that it was the first time I’d ever put it into words. I told her that if there was something one of my employees was doing incorrectly, I felt it was my fault … the first time. If I’d told someone what to do and how to do it, and the employee was not performing the task as directed, I had likely not made my point clearly enough and in a way that this person could understand.

Affirm That the Other Person Understood

In that case, we would have a meeting — a first meeting. I would spend extra time to make sure my point and instructions were understood, and I’d have the employee repeat back to me and even demonstrate what I was trying to get across. Once the person had ensured me that they had understood, then we were back on track. “You don’t want to have a second meeting with me about the same thing,” I told the woman. You see, the second meeting was simply to remind the person both of our first meeting, and that they had assured me they understood what I expected from them. I would convey to them that if they did not grasp what I was trying to say, they should have asked me to clarify. I would then give them the opportunity to get whatever information they needed from me to be successful.

Refuse to Endlessly Explain and Re-explain

“The third meeting,” I advised, “is you collecting your final paycheck in my office if it happens again.” Harsh? Perhaps. Important to my health and sanity? Yes. Imperative in maintaining a harmonious working environment for the rest of my staff? I believe so. I’d like to think that this method worked, in some way, even for those who had to have that third meeting. I have to wonder if a similar form of tough love wouldn’t work when we’re trying to live our lives with multiple sclerosis. If someone doesn’t understand what I’m going through, perhaps it’s my fault for not explaining my limitations properly — my fault the first time, that is. When someone puts demands (actively or passively) on us after we have laid out our situation, maybe we should make sure they really understood. I like to think it was just an error in communication, and I’m perfectly willing to take the responsibility for the error. If, however, we’ve had that first meeting — if I’ve explained and they have signified they understand — and it happens again, then we have a problem. No, they have a problem. I don’t have the time, energy, or inclination to waste my precious resources explaining and re-explaining my MS to someone over and over again. If you say you understand and you don’t, this is not my fault. And it’s no excuse to say, “Oh, yeah. You told me, but I thought it would be different this time.”

Letting Go Is Sad but Sometimes Necessary

I’ve sadly had to have “the third meeting” with a few people in my personal life over MS. Some try to make me feel bad for the episode, but I know that those of us with MS are not the ones at fault. We know our bodies and we know this disease; we’re not the ones who have the problem accepting that this is how it is. Don’t let anyone make you feel like less of a person because you have this disease. Don’t let others decide your course of action in living with MS. You are the boss. You run your kitchen. It’s not easy to distance yourself from people you thought — or hoped — were friends and allies, but it’s easier than living with people who disregard you and your situation. Are there people with whom you think you should have a few meetings? Wishing you and your family the best of health. Cheers, Trevis My book, Chef Interrupted, is available on Amazon. Follow me on the Life With MS Facebook page and on Twitter, and subscribe to Life With Multiple Sclerosis. Illustration: Getty Images Important: The views and opinions expressed in this article are those of the author and not Everyday Health.See More NEWSLETTERS

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