I Was Diagnosed With MS At 22. Now I’m Trying To Change The Narrative On Chronic Illness

At first I thought my life was literally over. But then I realised telling my story could help others, writes Jessie Ace.
Courtesy of the author
HuffPost UK
Courtesy of the author

“My arm has gone dead.”

Not the worst thing in the world you may think – but for me, it meant my life changed forever.

I was 22 and had been working non-stop day and night to complete my university degree. I’d also been working hard setting up a business in my second year – I’d accepted the prospects of a job after I left seemed pretty slim. So when I had huge plans for when I left uni, determined to start my brand new career as an illustrator, designing anything that could have a pattern or character on. I had big dreams of everyone owning something with my designs on.

I’d managed to get a book deal for when I left, an agent to represent me at major trade shows around the world when I left, and I even had my work already stocked in some boutique stores while I was still at university with the promise of more when I left. I was so excited; all I needed to do was to finish university and start my new life I’d worked so hard for.

But life never quite goes as you expect it to, does it? The morning of my last day at university – it’s always the last day, isn’t it? – I woke up feeling paralysed on my left side.

“The business I’d painstakingly built up over the last two years was taken away overnight because I couldn't hold a pencil. It was the only thing I knew, and now I felt like I didn’t know who I was anymore.”

Still feeling numb and weird after a week, I was begrudgingly dragged by my boyfriend to my GP’s office for an appointment, where the doctor announced she thought I’d had a hemiplegic migraine, which causes localised weakness and numbness.

“Told you there was nothing to worry about!” I proudly declared to my boyfriend. Little did I know that diagnosis would change when the doctor rang the second I got home. She ordered me to go to the emergency room, immediately. She now thought I could have had a stroke.

A stroke?! I thought she was crazy, but at the same time, actually, it kind of made sense. I’d been working so hard after all, plus it meant the worst had already happened right? It couldn’t possibly get worse.

It got worse. A came out of hospital a week later with a diagnosis of multiple sclerosis, (what the heck is that, I remember thinking). I thought my life was truly, literally over.

The illustration business I’d painstakingly built up over the last two years was taken away overnight due to the lack of strength in my hands and inability to hold a pencil. It was the only thing I knew. I felt like I didn’t know who I was anymore. I felt like I’d lost my livelihood I’d worked so hard to build and my dreams were shattered before they got chance to start. My university degree that I’d poured everything into for the last three years? Suddenly invalid. Everything I knew was gone. My life had gone. I was gone.

Courtesy of the author
HuffPost UK
Courtesy of the author

It took a good four years of feeling sorry for myself, blaming myself for not looking after myself more before I accepted my diagnosis. I remember complaining “why me?” or “what did I do to deserve this?” People that I was friends with no longer wanted to know me. They didn’t understand what MS was and neither did I.

“What do I do now?” I thought. I decided I’ve got to turn MS into something good. But how? After my doctor told me in hospital to Google my diagnosis to find out about what this health condition was, as you can imagine I found every negative story going. So my initial thought was that I have to change what people see when they first get diagnosed.

I specifically noticed there was no ‘young voice’ on any of these MS websites at the time. There was nobody discussing how my condition was affecting me right now as a 27-year-old woman. Like for example, getting married and feeling pressure from family and friends to start a family of our own or getting a blue disabled badge and having people judging me because I didn’t look ‘sick’. I found out that most of the people already telling their stories on these sites were much older and had therefore already experienced a lot more of MS than what I had.

I began writing for the biggest charity I could find at the time: the National MS Society in America. Which by the way, took forever to convince that they needed a young voice. From there I started writing for English-based MS charities and magazines too.

“I realised my story can help change people’s lives when I realised my story was bigger than me...”

I never expected to be a writer. But what came next shocked me more: I started a podcast. Now, the DISabled to ENabled podcast is a series of interviews with people diagnosed with chronic illness who have fought through it to create something incredible. I’ve interviewed people such as the CEO of the MS Society, famous radio DJ Scott Mills, actresses like Ciena Rae, inventors like Barbara Alink, even Paralympians like Kadeena Cox and Ironmen like Conor Devine! Crazy, right? I used to be the shyest, quietest, most wallflower-like person you could have ever met, and here I was interviewing celebrities and influential people from all over the world.

How the heck did I get the confidence to do that? Well, I just asked them to be on the show. The way I got started building my confidence was by sharing my story on Facebook live videos when we had a wedding business about four years after my diagnosis. I’d never told anyone really about my diagnosis, so that was a scary thing for me. I mentioned on a video one day that I had MS and the response astounded me. Brides-to-be started asking for my advice for how they could navigate their wedding day with an invisible illness, how they could ‘pretty up’ their wheelchair or even how they could disguise their oxygen tank into their wedding dress.

That’s when I realised my story can help change people’s lives, when I realised my story was bigger than me. Telling everyone what I’ve been through could help give people a different perspective on their own lives. That then led to creating the ENabled Warriors Facebook group, which tries to help people who are newly diagnosed and be a place to go for other people who don’t feel like they ‘fit in’ with regular groups.

What have I learned from all of this so far? If something happens that directs you on a new path, don’t be afraid of it. It’s not a bad thing. I have a saying that I love: “It’s not the cards you’re dealt that matters, it’s how you play them that counts”. You are still capable of doing absolutely anything in life, sometimes you just have to be a little more creative to learn how to do it. Once you get past that, don’t take ‘no’ for an answer. Never let anything stop you from what you want to do. Take each day at a time and enjoy the journey. I believe in you.

Jessie Ace is a writer, illustrator and host of the DISabled to ENabled podcast

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