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I’m Visible

By Matt Cavallo

It is National MS Education and Awareness Month and the goal of this year is to be seen. Many refer to MS as an invisible illness which makes it hard for others to appreciate the struggle that person living with MS goes through every day. 

I have been living with MS for the past 15 years. When I was first diagnosed, I was frightened. As a little boy, I watched my Aunt Loretta go from being in a wheelchair to bedbound to passing in a short amount of time. Back then disease-modifying treatments were not available so her MS was aggressive, disabling, and very visible. 

Fifteen years ago when I was diagnosed, I thought I shared my Aunt Loretta’s fate. If you were to meet me now, it would not be obvious that I have MS. Today, I have no visible signs of MS progression, but that doesn’t mean that I don’t struggle each and every day.

I’ve heard MS referred to as many things in the past 15 years, but my favorite is the iceberg. MS is like an iceberg in that what you see on the surface of the water does not reveal the massiveness that lies in the depths below. What lies below can often be a huge destructive force that is powerful enough to sink the Titanic. Most people, however, only see the tip of the iceberg.

Humans are visual creatures. We live by terms like, “seeing is believing.” When we can see something, we can empathize or put ourselves in someone else’s shoes. Let’s look at the difference between a visible and invisible impairment. 

A visible example would be if I see someone who has a broken arm, I can empathize with that person’s struggle. I can imagine what it is like to not be able to move their arm because of the cast and how difficult that impairment might make it to pick up stuff, get dressed or bathe. Not to mention the itchiness that the person must experience with a cast on.

Let’s take the same arm and instead of a break, let’s say a person has an MS relapse which damages the nerves running to that arm so it no longer functions properly. That person would have trouble picking up stuff, getting dressed, bathing, eating, and all of the stuff that comes along with having a broken arm. That person may also experience itching that no amount of scratching can cure because of the nerve damage. 

The difference between the MS damage and the broken arm is that the broken arm is visible with a cast. However, with MS the cast never can come off. That damage may be permanent even though their arm looks perfectly normal.

How do I know so much about this? This is me. I had a relapse in 2016 which made my right arm and hand numb, itchy, and hard to function. I struggle from day to day getting dressed, eating, bathing and have been told that this damage is permanent. Yet, when you see me, you don’t see my nerve damage. You don’t see my daily struggles. You may even reach to shake my numb right hand. 

Now that I told you, I’m visible. You may have a new respect for me knowing that I am typing this article with fingers that I can’t feel. You may be able to empathize with how it must feel to have an arm that fell asleep and will never wake up again. I hope that by sharing my story, I will help others share the ways that MS makes them feel invisible too. Let’s make sure we are all seen clearly in 2020. How will you make yourself visible with MS?