Beyond the Stigma

I was diagnosed with MS in 2011. Some people remember the day of their diagnosis like it’s an anniversary. They recall the weather, the circumstances of their life, the words that were said. For me, it’s a blur. I think it was summer. I know it changed my life.

I was only 21 when I started experiencing symptoms. I had set my alarm for 6 AM to study for a university exam and as I sat in the library, my hand started feeling weird. The sensation escalated over the next two hours until my hand went completely numb and I had to finish my exam holding my pen with two hands.

After a week of numbness in my right hand, I went to a walk-in clinic to see a general practitioner who did a series of tests, including an analysis of the difference between the right and left sides of my face.

“Your face is lopsided,” he said.

“That’s just what I look like” I responded.

“You need to see a neurologist,” he concluded.

For me, my first MRI was traumatic. Not because of claustrophobia, or the loud noises of the MRI that sound like you’re connecting to dial-up internet, but because of the vulnerability – the possibility of being diagnosed with a chronic, incurable disease.

I had a panic attack while in the machine and the results were inconclusive, so the neurologist prescribed me Ativan and sent me back in, this time introducing gadolinium contrast dye to enhance the images.

 After my second MRI, I received a phone call. It was 10 PM. I was just finishing a closing shift at my retail job.

“It’s not a big deal. We’ll just keep an eye on it,” said my neurologist.

What a relief, I thought.

“So, I don’t have MS, but we do want to keep an eye on it?” I responded.

“Oh, no, you do have MS,” he replied.

My heart dropped. All I heard about MS was that it was a terrible disease that could put you in a wheelchair. I had misconceptions that MS only affected the elderly and always led to restricted mobility.

I went home and decided I would tell no one. And I didn’t. Those were my darkest days. I lived in secrecy, hiding from the stigma of the disease.

I later met with an MS nurse who educated me on my treatment options. They were all injections that were accompanied by terrifying side effects. Overwhelmed, I left my neurologist’s office that day without a treatment plan.

I was fortunate that I did well with my MS during that time. I averaged about one relapse per year, which usually appeared in the form of tingling and numbness in my hands or legs.

My worst relapse came in 2013 when I went blind with optic neuritis in my right eye. It started as a spot in my vision, accompanied by a headache, but then I went completely blind in my right eye.

Still I told no one. Losing my vision was one of the scariest symptoms I have ever faced and, stubbornly, I faced it alone.  

I didn’t realize how detrimental my secrecy was for my mental health during those four years. I faced anxiety and depression that caused me to lash out at friends and family who didn’t know or understand what I was going through.

I experienced suicidal thoughts every time my boyfriend went to work, which led to extreme anxiety when faced with the prospect of being home alone. I developed a self-loathing for my inability to just end my life. I told myself I was a coward for fearing death which, at the time, I had determined was a better option than living with MS.

My anxiety about my body didn’t stop with my MS. Looking in the mirror, I developed a new sense of self-loathing over my weight gain.

Exercise started as a weight loss strategy, but eventually led to an upward spiral of happiness that released me from the grips of depression. I truly believe that exercise saved my life.

Once my mental health improved, I felt comfortable reaching out to the MS Society. I started by volunteering at the Jayman BUILT MS Walk. I had no idea that day would result in a series of life-changing moments that would reshape my MS journey.

What I found when I arrived at the Jayman BUILT MS Walk was a community of people who wore bibs that read: “I walk because I have MS,” “I walk for my mom, my aunt, my brother.” Here was a community of people proclaiming their connection to MS for all to see. My MS Walk experience helped me to realize that sharing my story could lead me to people who love and support me. It could lead to my loved ones walking with bibs reading “I walk for my daughter,” “I walk for my wife” and one day, “I walk for my Mom”.

My experience at MS Walk prompted me to begin telling people slowly. Soon I was invited to speak at MS events. Each time I shared my story, someone from the audience would approach me to share their own experience with MS. I not only realized how therapeutic it was to talk about my MS journey, but how powerful sharing my story can be to ensure no one has to go through it alone. Eventually, after becoming the Manager of the Jayman BUILT MS Walk, I shared my story in front of 1,500 MS Walk participants. But I still hadn’t told my parents.

When I finally told my parents about my diagnosis in 2018, my mom was shockingly calm and supportive. My dad, having recently lost his second wife to cancer, feared that he would lose me too. My experience with the MS Society exposed me to knowledge on the progress in MS research, which gave me hope for the future. When I told my parents, I was able to share that hope with them.

MS has always been a third party in my life. It has impacted the direction of my career, my relationships, and my family planning. When I was diagnosed with MS, I knew my life would change drastically, but it took me years to actually feel grateful for the ways in which it did. I now know that I can make a difference in the lives of others by sharing my experiences and in doing so, I will find a community of people who want to be there for me. I wouldn’t change a moment of my life because every moment has led me to where I am now.

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    Domenico Carnovale

    Great story!! Together we can find a cure!

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