A Confrontation with Uncertainty: Kajal’s MS Story

Guest post by: Kajal Rai

A cure for MS would mean that I could have a life of normality and a life of certainty. I’ll be able to go to sleep knowing that tomorrow is going to be just as great, if not, better than today. Right now, I go to sleep in fear because I don’t know what tomorrow will bring.

In October 2019, I was walking and I passed out. It was a terrifying experience. When I got to the hospital, the doctors thought something was wrong with my heart. They did a bunch of testing but no one could figure out what was wrong with me!

Thankfully, none of the doctors gave up on me. They had me see every specialist, including ones that I’d never even heard of. Finally, I had my first MRI. It was a nerve-wracking process, and I never expected the doctor to say what he said, “We can see some swelling in your brain.”

Just like that, I was sent home, terrified and confused. A few months later, I had a follow-up MRI and received the same news. The doctor referred me to a neurologist that specialized in MS because he had a sneaking suspicion that I had the disease. After visiting the neurologist in January 2020, I was officially diagnosed with MS.

At only 24 years old, I felt like my life was ending before it even started. I didn’t even know what MS was and I had no idea how prevalent it was in younger people.

I’ve always been super self-conscious growing up, and after I was diagnosed with MS, I didn’t want people to look at me as if I had a disability.

There were so many days where I wouldn’t leave the house. I didn’t want to talk to anyone or see anyone. I was terrified that my family and friends would look at me differently, so I hid my MS from them. My immediate family knew but I couldn’t fathom having my extended family and friends pitying me. Going to therapy has really helped me accept my diagnosis. I realized that before I can expect other people to accept it, I needed to accept it myself.

I don’t want to walk around with a big sign over my head saying, “I have MS,” but I want to normalize talking about illnesses, especially in the South Asian community. Since MS symptoms can sometimes be invisible, people in the South Asian culture look at you as if you are making up how you’re feeling. Some family members look at me as if I’m faking it and looking for pity. I wish they would be more understanding because although these symptoms may be invisible, my disease is very much real. I want it to be okay to talk about disabilities and for people to be open to understanding and accepting them.

Since my diagnosis, I’ve tried multiple disease-modifying therapies. I took an oral medication* for a little bit, but it didn’t work for me. Then this summer, I did my first infusion round but unfortunately, I have not seen much relief with it yet. But I’m still hopeful.

Some of the newer symptoms that I experience include heavy fatigue. I get eight to nine hours of sleep at night, and I still wake up tired. There are still nights that I can’t walk to the restroom because I can’t put any weight on my legs. I go into this vicious cycle of feeling bad for myself – what did I do to deserve this? I constantly blame myself as if I caused my MS.

What worries me most is losing the relationships in my life due to my MS. I experience terrible mood swings, especially when I’m in the middle of a relapse. I don’t want people to give up on me. I’m always fearful of losing the ones close to me due to the limitations on what I can and can’t do.

I don’t think people realize how prevalent MS is in Canada. The MS Society provides so many programs and services for people living with MS that are life-changing! It’s so important to raise awareness of this disease and raise funds that can help myself and other Canadians live a more fulfilled life.

Let’s continue to talk about MS. Let’s make it normal to share our feelings about our diagnosis. The MS community is so helpful and supportive, and I get the strength I need from hearing about other people’s stories.

You can help more Canadians living with MS

To bring help and hope to the Canadian MS community, please donate to the MS Society today. Your generous donations today can make a meaningful impact in the life of someone facing the pain and uncertainty of MS — the same way you made an impact for Kajal.