I was never one of those young people who thought of myself as invincible, but that’s probably because I was never really interested in doing terribly reckless things. At 21, I was in my final semester of undergrad and living with my parents (somewhat begrudgingly). I think the most dangerous thing I did was commute to school a few times a week. I had always been a safe and healthy kid and was very content that way.
I remember the exact day when all of that changed.
I woke up one morning and my toes were numb. It seemed weird, but I figured that I must have slept on them funny. In hindsight, that was a silly assumption, but there was really no other explanation I could think of at the time. I kept on with my day, barely giving it another thought. The next day, though, I noticed that not only were my toes still numb, now my both my feet were also numb.
Over the next few days that numbness crept up my legs and all the way to my waist. That was when I finally called my doctor. When I went in for the appointment and explained my symptoms, he didn’t seem too concerned. He gave me a steroid shot and said to call back in a few days if it didn’t get any better. After a few days, though, the numbness was still there.
Young and naïve
When I told my doctor that I was still having symptoms, he referred me to a neurologist. That’s when it all started to get confusing. Why would I need to see a brain doctor for a problem with my legs? It didn’t make sense to me, but I did what my doctor ordered without asking too many questions. I was young, naïve, and had been healthy my whole life — I wasn’t used to questioning my doctor.
After a slew of different tests with the neurologist, I found myself in the short stay wing of a local hospital getting an IV infusion of a drug I had never heard of. No one had told me yet what I was getting treated for, and I just assumed that this was a normal part of the process. Did I mention that I was young and naïve?
Throughout this whole experience, I was so preoccupied with getting back to my normal life and finishing school that the idea that I could actually be sick hadn’t really occurred to me yet. Even during my five-day outpatient stint in the hospital, I was going to school and working every night to complete my final project so I could graduate in two months.
Looking back, I’m not sure why none of this seemed weird to me. Eyes on the prize, I guess. I just figured that numbness was such an arbitrary symptom, that what I was experiencing could have been caused by all kinds of things. Even with all the doctor visits and odd treatments, somehow it hadn’t occurred to me that this was more serious — or that I should be more concerned.
I was only 21, how could I be sick?
Fear and denial
A week or so after the outpatient treatment I had a follow up with the neurologist. I remember sitting on the examination table when he walked in, scanned at my chart silently for a minute, looked up and said, “You have MS.”
I’d heard of MS but I didn’t really know what it was or anyone who had it. It was silent for a long time and the first thing I said was, “Am I going to die?”
In my young mind, having a disease meant you were probably going to die from it fairly quickly. I couldn’t wrap my head around the concept of long-term “chronic illness” — something that you have for the rest of your life. Everything after that moment is still a big blur. The last thing I remembered was the doctor telling me to research the medications that were available.
The next few weeks were filled with hours and hours obsessively Googling and wading through online forums. I was looking for answers but I came away with more questions. Even after doing more research I still wasn’t really sure if I was going to die or not. I didn’t know what to think, much less do, about my new diagnosis.
This all was happening right in the middle of finals, and there was no way I was letting MS get in my way of graduating. I focused on my final projects, pushed the reality of my new diagnosis aside, and got my degree, even graduating with honours.
My professor later said that he used my story as a way to tell students that there were zero good excuses to not turn in their work. I felt proud of that at the time, but now I look back and just see that it was denial and fear propelling me through those final weeks of school — not exactly exemplary behaviour.
After graduation, things got real when I started looking for a job. I felt like no one would ever hire me if they knew I had MS. I thought I would be forever unemployed and most likely in a wheelchair by the end of the year. At that time there were no popular blogs or advocates telling stories about people who still were living happy, healthy lives. I thought my life was over.
When I tried to explain my diagnosis to family and friends, I gave them all incorrect information because my doctors hadn’t really explained to me what MS was, how it would impact my life, or that each person’s MS looks completely different. I’m sure I shared a very sad, false version of the truth.
If I could go back and talk to 21-year-old me, I’d tell her that her researching and self-advocacy skills could really use some work. What I didn’t know then was that the fate I was convinced I’d have couldn’t have been farther from reality.
The power of education
It’s been 12 years since my diagnosis and I’m happy to share that I have educated myself significantly since then. I now know that, while MS has changed my life significantly, I still have so much life left to live. Over the last decade I’ve met other people with MS, shared stories, and learned from them. I’ve devoted a huge chunk of my life to helping other people living with MS and their families understand that all of our stories are different.
Twenty-one-year-old me never fathomed the adventures I’d have, or that my MS would go dormant for seven years, allowing me live completely symptom free. I’d never have guessed that I’d be well enough to play roller derby — or that there are a bunch of other women with MS who also play roller derby, and climb mountains and jump out of planes and do all kinds of things that healthy people do. Thinking about it now, it’s funny that it took an MS diagnosis for me to finally start exploring my more adventurous side!
I realise now that I was very sceptical and negative about MS in my young twenties because I wasn’t educated, I wasn’t asking the right questions, and I didn’t have any mentors. I let having MS taint a large part of my twenties with fear even though I was relatively symptom free.
Finding inspiration in MS
Now in my thirties, I still have a lot to learn about life — but I do know a lot more about MS and the ways it affects me. I know now that MS is not the death sentence I once feared all those years ago. I know that having MS doesn’t mean I don’t get to live a full life. My MS has definitely influenced some major life decisions, but it has also helped me to find more clarity. It’s taught me to how be more thoughtful in my choices, and how to cut through the static and to prioritise my health and my happiness.
If you’re newly diagnosed with MS, no matter your age, don’t lose hope! Learn from the missteps of my youth and don’t give into negativity — MS changes you, but it doesn’t have to be for the worse. Talk to your doctors, ask them questions, and research credible sites for more information — then ask more questions! Find others like you and learn from their experiences as well. The more information you have, the more it can empower you to live the life you want with MS.
UK/MED/18/0279 October 2018