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MS and the Fear of the Unknown

By Matt Cavallo

When I hear people talk about multiple sclerosis, they mostly focus on the physical symptoms or symptoms they can see and relate to. What they don’t see is the profound emotional toll that MS takes on you from the moment you are diagnosed. Before the initial onset of symptoms, you were living your life hoping to fulfill all of life’s dreams and aspirations. Then, suddenly out of nowhere, some devastating onset of symptoms crashes over you like a tidal wave and you are left to pick up the pieces. This is when the fear starts. The fear of the unknown.

When you were diagnosed, you probably heard something to the effect that MS is an unpredictable, multiple-occurring disease; that you may or may not experience relapses followed by periods of remission; and that there are treatments available that can help modify the course of the disease. The only problem is that they can’t predict when or where an exacerbation will happen. They also don’t know what the next exacerbation will affect or if there will be any lingering disability. They just don’t know until it happens. Not knowing is a lot for a person to handle emotionally. 

As humans, we are creatures of habit. We go to bed and wake up around the same times, and the times in between we tend to follow our comfortable routines. Some of us even stay in relationships or jobs because of that comfort and familiarity even if deep down we are no longer content. The crushing fear of MS threatens those routines and those comforts, leaving you in a constant state of the unknown. Then suddenly, you stop participating because of the fear.

Many of us out there have had fears since being diagnosed but are often afraid to talk about it. Have you put off a trip because you weren’t sure if your MS would act up? Are you afraid to tell your employer about your MS for fear of retribution? Has fear stopped you from pursuing a relationship because you don’t want the person to know you have MS? Are you thinking of not having children because your afraid your child may have MS?

Do you know how I know that you have suffered in silence with these fears? Because I have them too. My greatest fear is that MS will come rearing its ugly head and knock me down to the point that I can’t get back up again and I won’t be able to provide for my family.  As I write this, I am watching one of my sons do his homework. As a parent you are supposed to protect your children and be there when they are scared. Yet, there he sits, just a few feet away, not knowing that his dad is afraid.

That is the thing about fear. We all experience it, but we tend to keep it bottled up inside. We are either hoping that it goes away on its own or we keep living from day-to-day praying that we don’t succumb to it. We don’t verbalize it because we have been conditioned to think that talking about your fear makes you weaker. 

Right now, to you, I am admitting that I have MS and I am afraid. I am afraid of what my next relapse will be and what it will take away from me. I am afraid that it will make it hard for me to keep up my daily routine or affect my family. I am afraid of what others might think about me once they learn about my MS. 

It is liberating to let you know that even though I have had MS for more than a decade, I am still afraid of the unknown. My hope is that by sharing this you will know you are not alone. You can learn to balance your fears with the simple truth that none of us know what the future holds. Your fears may never subside but do not let them overshadow the joy that life has to offer.