A sand face gets broken down by waves and rebuilt

MS in My 20s Part 3: A Broken Body

Emotionally speaking, multiple sclerosis (MS) made me experience many feelings throughout my 20s. Fear, confusion, anxiety, anger, loneliness­­­­­, and among many other things, I felt betrayed. Betrayed by my own physical body. MS is an autoimmune disease which essentially means (to oversimplify) my body was attacking itself; friendly fire. This was such an odd feeling and unfortunately shaped how I thought of my body in my 20s.

MS in my 20s: The cost of living

After I was diagnosed, I wanted to live by the phrase, “I may have MS, but MS doesn’t have me”. I wanted to live my life despite MS! But it didn’t take long for me to learn why that phrase wasn’t entirely true. At least not when speaking literally.

MS had redefined the limits of my body. If I overdid it, I would pay for it the next day. I soon felt like I couldn’t keep up with the pace of the world around me. After a while, I started to better understand my body’s new limits and the costs of surpassing them.

A crumbling sandcastle

So I tried to pace myself and strengthen the parts of my body MS had weakened after each attack. I would experience a relapse and then focus on my recovery. Slowly but surely, I rebuilt, but it seemed like MS was just waiting by my side to tear everything right back down.

It started to feel like trying to build a sandcastle too close to the shore. You build it, a wave comes in, your castle crumbles away, you rebuild it, another wave comes in, your castle crumbles again, and so on, and so on. It was very frustrating, but I was determined to overcome it.

Stuck with a fixer upper

Eventually, I started to feel like I “got sold a lemon”. The body I got was not in its prime like I thought it should be. This thing was a freekin’ fixer-upper. Not even certified used. It constantly needed work and came with never-ending maintenance fees.

I felt like I was back in high school with a crappy piece of junk while all my friends had brand new sports cars. Wow, I totally got ripped off! I would say this is the best depiction of how I saw my body in my 20s. Everyone else was showing off their nice new cars in the parking lot, but look what I got.

Just along for the ride

Due to my body constantly “breaking down”, I started to find myself feeling hopelessly helpless much more often than not. I didn’t feel like I was really in control of my life. Sometimes I felt as though I wasn’t even in the driver’s seat of my body but instead in the passenger’s seat with just one hand on the wheel. I could influence what was happening, but I mostly felt as though I could only sit there and watch. I was just along for the ride.

Why can’t I fix me?

Sometimes I found myself overcome with an anger-fueled sense of determination. “This is my life,” I would mentally say to MS, “my body, and I’m tired of you screwing everything up!” I would become dead-set on fixing my body like I had fixed old computers, appliances, motorcycles, and so many other things in the past.

I tried everything I could think of but nothing seemed to really be a solution. It was beyond frustrating! First of all, how could something that has worked all my life just stop working? Secondly, why could I not fix it? I could fix anything! So why can’t I fix me?

My body isn’t indestructible

MS made me think about my own mortality for the first time in my life. Specifically, after an especially bad relapse that landed me in an in-patient physical rehabilitation hospital for six weeks. This was when reality slapped me in the face to let me know I wasn’t indestructible like my teenage years left me believing. It was now so clear to me that my body was fragile and prone to breaking.

Everything can be taken away in an instant whether it’s being able to run, walk, brush your own teeth, open and close your hand, or even drink a glass of water. Losing all of that, even for just a short period, really made me realize just how much I was taking for granted. You don’t know what you got till you lose it, right?

But you look good!

The phrase many people with MS hate to hear. I was in my 20s living with an invisible illness, so of course, I looked good! Hearing that always made me feel like my body was lying to everyone to make me sound like I was lying about being sick. On one hand, sure, it made it easy to blend in with my friends and not stick out in a crowd. But on the other hand, it felt more difficult to convince people that I was feeling like garbage. One of those scenarios played out much more often. I’ll let you guess which.

Coming up

In part 4 of this collection of posts, I’ll talk about my experiences with mental health issues (like depression and anxiety) throughout my 20s. Throughout this series, if there is ever anything you would like me to talk about, just let me know in the comments below! Thanks for reading!

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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