A man explaining something to two friends. They only see things in 3 colors while he sees 5.

Not Being Heard

I have been writing about my many experiences with multiple sclerosis (MS) for years, and one thing people have told me from time to time is, “This is exactly how I feel! I’m sharing this with my family! You’ve put what I’m experiencing into words!” Many people with MS have a hard time describing what they’re experiencing to loved ones which is totally understandable because it’s definitely not easy to translate the chaos MS can cause into words that people can easily understand. In fact, many times, I struggle to put what I’m experiencing into words that make sense even to me, and I’m the one actually feeling what I feel! So how could I expect someone else to get it? It’s incredibly frustrating to not be able to explain to someone how MS is affecting you and even worse is when you start to feel like people just think you’re making stuff up, you’re crazy, or you’re just overexaggerating things that everyone deals with.

Trying to explain MS symptoms

When I was little, I used to have this nightmare about, let’s call it a monster, that was trying to get me. I would be in a room alone with it, and the door would be open, allowing me to hear everyone talking in the next room down the hall. I would yell and cry for help because the monster was right there creeping closer and closer towards me. The thing was, despite me shouting at the top of my lungs, no sound would come out. No one could hear my cries for help. No one could hear me. The feeling of helplessness and of no one being able to hear me that consumed me during this dream? That’s the feeling I get when I’m trying to explain an MS symptom to someone, but I just can’t seem to make them understand what I’m dealing with. From my perspective, what I’m experiencing seems super obvious, but no matter how I try to describe it, I don’t feel heard. They don’t get it. They don’t hear me.

Invisible symptoms are the hardest

While some symptoms of MS can be relatively easy to describe because they can be seen (like tremors or difficulty walking), many symptoms are invisible and can’t easily be measured. These symptoms can often be the worst, yet sometimes when you try to tell people about them, it feels like they are listening to you talk about an imaginary friend you have. “Oh, his name is Ralphie, huh? Ralphie sounds pretty mean! Maybe if you just take a little nap, Ralphie will go away? Did you try that?” OK, I’m sure most people don’t come off that condescending, but I’ve heard many stories. Anyway, it’s maddening! "My symptoms aren’t imaginary just because you can’t see them or understand what I’m telling you! They’re real!"

Describing an MS symptom feels like...

I like to think of it like this; every color that we can physically see with our eyes is made up of some combination of red, blue, and yellow, right? Red and blue makes purple, red and yellow make orange, blue and yellow make green, and so on. But what if one day, something happened, like, you were struck by lightning and then all of a sudden, for some crazy reason, you could now see a color that was not made of red, blue, and yellow. No one else could see this color, only you. How would you describe it? How could you describe a color to someone that is literally incapable of seeing it? Sometimes, that’s how trying to describe an MS symptom feels… I’ll just have no clue where to even start because no one can “see the colors that I can”!

It's nice to finally feel heard

Unfortunately, I think a lot of people hear you try to explain a weird MS symptom to them and subconsciously, rather than simply admitting that they can’t understand what you’re telling them, they decide that it’s easier to just assume that it’s all in your head. I’m not really blaming anyone here because that’s what all our brains try to do; the brain tends to freak out when it can’t explain something. This is why, in my opinion, it’s so important for people with MS to have friends who also have MS because chances are, they have experienced what you’re going through as well, so they’ll probably understand what you’re saying. They too can “see the strange new colors that you can see that no one else can.” Finally being around someone who gets it is so relieving, even therapeutic. It’s nice to finally be heard. I wish I knew how to make the people around me who don’t have MS fully understand what I deal with on a day to day basis, but I’m still not one-hundred percent sure how to do that.

How do you deal with the difficulty of trying to explain to people who don’t have MS what different symptoms are like? Share below!

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