MS in My 20s Part 1: Introduction
Last updated: April 2022
According to the National MS Society, most people are diagnosed with multiple sclerosis (MS) between the ages of 20 and 50.1 Regardless of when MS comes about, this is an absolutely life-changing diagnosis for everyone. I myself was diagnosed with MS in 2010, a few months after I had turned 20 years old.
In this series of posts, I’ll be sharing what I feel were the primary challenges of my life with MS in my 20s. But first, let’s start things off with a question you may have heard or thought about yourself.
Is it better to be diagnosed with MS when you're younger or older?
After being diagnosed with MS, I remember being asked whether I thought it was better or worse to be diagnosed at a younger age or an older age. At that time, I think I argued that it was worse to be diagnosed with MS at a younger age. Why wouldn’t I have? Since I was diagnosed in my 20s (what I thought was going to be the prime of my life) all I could see was what I had lost, and what I may never get to have.
I’ve encountered and contemplated, that question many times since then, but now I would argue that neither is better, and neither is worse. What I’ve come to realize after seeing and hearing about how this disease affects so many different walks of life, is that it's just...different.
People say MS is the “snowflake” disease because no two people with MS are the same; the symptoms they have, the severity of those symptoms, the combination of symptoms, when they appeared, whether they became permanent, etc. There are so many things that can affect how people experience this disease both objectively and subjectively.
Age is just one more factor that helps shape our uniquely disfigured MS snowflake, and therefore, how each one of us experiences this chronic illness differently. There are some things that MS may cause everyone to experience, but age can cause some of those things to have more of an impact (subjectively) on some than others.
What it’s like being diagnosed with MS at a young age?
That’s what I want to talk a bit about in this series of posts. What my MS experience was like from the perspective of someone in their 20s receiving and continuously learning to live with an MS diagnosis. A perspective that I feel isn’t shared nearly enough.
So, let’s set the scene for the next few posts in this series about life with MS in my 20s. I had just turned 20, and I was living with my parents rent-free. I had a job, a girlfriend, and an active social life. My biggest worries at the time were putting gas in my truck and paying for my car insurance which...were hardly worries at all. I had plenty of “disposable” income which I quickly spent on going out. Life was good. Like many people my age, I felt like I was on top of the world. I felt like there was nothing I couldn’t do!
Cue the all too familiar diagnosis story. Strange health problems popped up out of nowhere and they progressed fast. One day my foot was numb and a few weeks and ER visits later, I was in a wheelchair unable to walk. I had received a brain MRI and a lumbar puncture, and I really didn’t know what for.
One simple sentence
While I waited for the results, and as my body stopped working properly, I quite seriously wondered if I was dying. I had zero knowledge of health and medicine at the time, so in my mind, this was within the realm of possibilities.
As I ruminated over all the horrible possibilities my brain could come up with, time seemed to grow slower and slower. But then, just as suddenly as all of this came about, the reality I thought I was living in drastically changed. The results of my MRI were in. All it took to shift my world off its axis was one simple sentence. A sentence that everyone living with this chronic illness has probably heard some variation of.
“You have multiple sclerosis...”
In part 2 of this collection of posts about life with MS in your 20s, I’ll be exploring how MS impacted my social life. Throughout this series, if there is ever anything you would like me to talk about, just let me know in the comments below!
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