5 Essential Questions About Multiple Sclerosis Answered

I’ve been living with multiple sclerosis since my official diagnosis in 2018, though my first relapse happened in 2014. If you’re interested in hearing the full story of how I got diagnosed, I’d be happy to share that another time.

Globally, the World Health Organization estimates that multiple sclerosis affects about 3 million people, with 1 million of us living in the United States. I often get asked how I’m feeling, how MS impacts me, and how I manage it, so I thought I’d take a moment to answer a few questions about how it affects my life.

1. How did your MS diagnosis change the way you approach daily life and long-term goals?

When I was diagnosed in my late twenties, my approach to life and goals didn’t change. Honestly, I wasn’t even sure if I had long-term goals at that time — I was living day by day, hoping things would just kind of work out.

It wasn’t until my mid-thirties that I started to approach life differently. As I’ve gotten older, MS affects me more now than it ever did. I work three days a week, and I listen to my body, taking naps when I need them to get through the day. I’m more focused on long-term goals now — writing more, opening up about my experience with MS, and making sure to enjoy the good days while giving myself grace on the bad ones.

2. What are some misconceptions about MS that you wish more people understood?

One of the biggest misconceptions about MS is that it’s contagious. I’m not sure where this idea started, but MS isn’t contagious at all.

Another misconception is that everyone with MS will eventually end up in a wheelchair. While MS can affect mobility, it doesn’t mean every person with the disease will require a wheelchair. In the past, when there was less information and fewer treatment options, that may have been a more common outcome. Now, with a range of medications available to slow or prevent disease progression, many people with MS maintain their mobility. Although doctors still don’t know exactly why people develop MS, the treatments available today offer much more hope and management options.

3. How do you manage the emotional and mental health challenges that come with living with MS?

I manage by writing everything down in my journal — doctor’s appointments, new symptoms, changes in progression, and all the emotions that come with them. Writing helps me process it all and prevents me from bottling up my feelings. It’s an emotional release that allows me to clear my mind. I also find comfort in having a record to look back on. Seeing how I’ve progressed over time reminds me of the challenges I’ve overcome and how far I’ve come on this journey.

4. What has surprised you the most about your journey with MS?

What has surprised me the most is discovering how resilient I am. In my twenties, I never would have described myself as tough, but the more challenges life throws at me, the stronger I become. I’ve realized that I can handle almost anything that comes my way. At one point, it felt like the universe was against me, with the diagnosis and constant setbacks, but now I see that those challenges have only made me more resilient and capable.

5. What advice would you give to someone newly diagnosed with MS?

My advice to someone newly diagnosed with MS is to educate yourself as much as possible. Learn about the disease, read about other people’s experiences, and understand their challenges and victories. But most importantly, make your own decisions, especially when it comes to medications and lifestyle changes. It’s easy to let others influence your choices, but remember, this is your journey. Whether you’re deciding on treatment options or considering work schedule adjustments, trust yourself to choose what’s best for you.

I also recommend keeping a journal. Write down any questions, uncertainties, new symptoms, or emotions as they arise. This will help you keep track of your concerns and ensure you don’t forget important details when discussing your condition with your doctor.

This was first published on Medium.com. Click here to view it there.