Crafting My MS Mask
Last updated: September 2022
Most of the people I encounter from day-to-day in my life only ever get to see the mask I put on to hide the toll multiple sclerosis (MS) is taking on me. They see a persistent smile, an unbreakable sense of humor, and an everlasting can-do attitude (or so I hope).
But as I'm sure you can relate, that is- often -just part of the "mask" I put on almost every day to try to blend in with the world and not push people away with negativity.
A look at living with MS and hiding my feelings
Many people here on multiplesclerosis.net have written about the concept of putting on a "mask" to hide how we really feel each day in our life with MS. But what I want to highlight today is the amount of work that goes into creating and maintaining that mask because it isn't always as simple as just throwing it on each morning.
Most people over the age of ten understand that the monsters they see in the movies aren't real. They're just actors wearing scary masks. But, what many people may not realize is just how much work goes into creating and putting on those masks.
Those monsters may have only been on screen for a total of one hour but behind the scenes? It could have taken multiple hours to put on all the latex prosthetics and makeup that those masks are comprised of.
On top of that, those latex masks and costumes are often uncomfortable for the actors, sometimes painful! But they do it to make you believe, even if only for a moment, that something that doesn't exist, does.
Not everyone understands chronic illness
Most people in day-to-day life don't really have a good or even general, idea of what MS is or how it works. People tend to believe what they see and don't really think about what may be beneath the surface. "He looks fine to me, so he must be fine."
Of course, anyone living with any kind of chronic illness with invisible symptoms knows that how we look on the surface doesn't necessarily reflect how we feel inside. But, unfortunately, many people just do not understand that.
At first, after being diagnosed with a chronic illness like MS, we tend to try to explain how it all works to everyone we interact with. At least I did. Some people would get it, some people said they got it, but many people really didn't. It didn't matter how many times or how many ways I tried to explain that how I look on the outside doesn't reflect how I feel on the inside. The concepts just never stuck.
Why am I exhausting myself?
So, eventually, I just stopped trying to explain to everyone. Instead, I found myself taking the "smile and nod" approach. It was often easier to just pretend that all was well.
Why was I exhausting myself trying to explain something that not everyone I encountered needed to know anyway? It was one thing to spend the time and effort trying to help close friends and family understand, but the cashier at the grocery store? What did it really matter?
And that was when I became aware of the mask I was now wearing to essentially hide my MS. Or rather, hide how my MS was making me feel on a day-to-day basis.
Wearing a mask is easier...
I would smile, laugh, and try to maintain an upbeat attitude. Even if, underneath my MS mask, I was feeling terribly depressed, physically broken, and just wanted to sleep. It was easier. "Easier" is the keyword there because it was, and still is, sometimes rather uncomfortable to wear that mask.
OK, remember how I mentioned all the behind-the-scenes work that goes into creating the monsters we see in movies? Well, just like that, there is a lot of behind-the-scenes work that goes into putting on my MS mask every day.
None of it is fun, a lot of it is uncomfortable, and sometimes some of it is painful. But I do it to- well… frankly, make my life a little easier.
This takes lots of time, effort, stress, and money
Instead of applying latex prosthetics and makeup, I have to manage and take all my medication, some of which is injected or administered via IV infusion. I have to stay on top of all my appointments with my doctors, specialists, and nurses. I also must occasionally go in for labs, brain MRIs, or lumbar punctures (LPs).
It's also important that I regularly exercise, eat well, and work to maintain my mental health. So far, lots of boring phone calls, time commuting to these appointments, and of course, needles!
All of this takes lots of time, effort, stress, and money. I can't overemphasize just how much I don't enjoy any of this.
My mask allows me to enjoy my life
I wish it all wasn't a prerequisite for me to participate in life, but when I fail to stay on top of it all? When I inevitably start to slack here and there? My mask starts to crumble, the people around me begin to notice, and the repetitive Q&A sessions begin.
My goal isn't to deceive the world and act like I don’t have MS. Rather, it’s to simply blend in so I can try to better enjoy my life without constantly having to explain to people what I’m feeling. Is that so wrong of me?
Do you ever have moments where you question your self worth because of your MS?