How It Feels to Be Diagnosed With Multiple Sclerosis in My 20s

·5 min read
Jessie Ace, a young woman wearing glasses and smiling.
Jessie Ace, a young woman wearing glasses and smiling.

“My arm has gone dead.” Not the worst thing in the world, you may think, but 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 because the promise of a job after seemed pretty slim.

I had huge plans for when I left university. I was going to start my brand new career as an illustrator, designing anything that could hold a pattern or character. I had big dreams of everyone owning something with one of my designs on it. I’d managed to get a book deal for when I left, an agent to represent me at major trade shows around the world and I even had my work already stocked in some boutique stores while I was still at university! I was so excited.

Related:Why Learning Self-Care Is a Process as Someone With Multiple Sclerosis

All I needed to do was to finish university and start the new life I’d worked so hard to build. Pretty easy, right?

But life never entirely goes as you expect it to.

The morning of my last day at university – the very last day – I didn’t quite feel “right.” I’d been working to exhaustion most days, so the fact that the left side of my body had gone weak, numb and wobbly sort of made sense to me. I was just stressed.


It was still numb and weird after a week, so my boyfriend begrudgingly dragged me to the GP’s office for an appointment. Nothing could be wrong, though, I was 22. I was perfectly healthy and had never, ever gotten sick; I was just exhausted and stressed, that’s all.

When the doctor announced she thought I’d had a hemiplegic migraine (which causes localized weakness and numbness) it made total sense.

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“It’ll probably come back in a few weeks,” the doctor told me.

“Told you there was nothing to worry about!” I declared to my boyfriend.

Little did I know that an hour later, that feeling — and the diagnosis for that matter — would completely change.

My phone rang just as I’d gotten home. It was the doctor. She’d been talking with a colleague, and together they came up with the idea I could have had a stroke.

She ordered me to go to Accident and Emergency at the hospital, right now.

“Shit,” I reacted.

A stroke? I thought she was way off base, but at the same time, I’d been working so hard that it made sense, plus it meant it had already happened right? So it couldn’t possibly get worse from here.

It got worse.

After coming out of the hospital a week later with a diagnosis of multiple sclerosis, I thought my life was indeed over. What the heck was multiple sclerosis?

Related:Choosing Kindness This Year in My Life With Multiple Sclerosis

A few weeks after my initial diagnosis, I lost the use of my right hand too, leaving me unable to hold a pencil.

The illustration business I’d painstakingly built up over the last two years was taken away overnight.

My university degree that I’d poured everything into for the last three years? That felt useless.

Everything I knew was gone.

My life had gone.

I was gone.

It took a good few years to accept my diagnosis. A good few years of feeling sorry for myself, blaming myself for not looking after myself more. I was always complaining, “Why me?” or “What did I do to deserve this?” People I was friends with no longer wanted to know me. They didn’t understand what MS was. Neither did I.

“What do I do now?” I thought.

I’ve got to turn MS into something positive.

I decided to help others understand the condition and inspire people to see that their life is not over. In fact, it’s only just beginning.

First, I created the ENabled Warriors — an alternative, positive group to help people who are young and newly diagnosed. I hated the way support groups online were full of horror stories and negative posts. I had a negative experience going to an MS group when I was first diagnosed and can understand why there are not more young people going to these.

I started blogging for the National MS Society, MS Society, and MS-UK who each encouraged me to get back into illustration – I was very hesitant in case I lost the use of my hands again. You can take a look at my blogs and drawings on my website.

Most importantly, I wanted to bring people with chronic illnesses together to share their empowerment stories. I created the DISabled to ENabled podcast and have interviewed people such as CEOs, famous radio DJs, even Paralympians and Ironmen!

But it wasn’t easy to get to this stage. At the start, I had zero confidence. I couldn’t hold a conversation — I didn’t know how! For years I’d been quiet and lacked confidence in who I was. I didn’t want to live that way anymore; I wanted to be the confident person in the room, the one not afraid to speak to anyone. Over time I taught myself to be confident. I taught myself to manage my anxiety. I taught myself to manage my symptoms (without extra meds). I want to pass on what I’ve learned to others.

I have far more of an appreciation for life now. I appreciate how good it feels to type with two hands when I can and to be able to take my dog for a long walk in the sunny woodland, listening to the birds chirping in the trees and the fresh early morning air against my face.

My eyes finally see what is around me for the first time.

Life is truly amazing, and I am grateful every day for having multiple sclerosis.

Read more stories like this on The Mighty:

My 'A-Ha Moment' in Life With Multiple Sclerosis

The Gifts I Can Give as a Low-Income Person With a Disability

When I Was Diagnosed With Multiple Sclerosis on Black Friday