Multiple Sclerosis: I Found Power in Connection

I’d been experiencing pain in my neck and down my arm for a while, and I thought it was a pinched nerve. One morning, I couldn’t move my neck at all. I was in so much pain. Thankfully, I was able to get an appointment with an orthopedist right away.

The doctor agreed I probably had a pinched nerve, but she sent me for an MRI of my neck just to be sure. Later, her office called and said the MRI showed what looked like lesions on my cervical spine. I was given a report that listed out all of these horrible possibilities of what it could be. Multiple sclerosis (MS) was one of the things on the list.

The next day, I went back for a repeat MRI, this time for my brain and spine. I got a call from the doctor about an hour later, so I knew right away that something was definitely wrong. She said it was most likely MS and sent me to a neurologist. I had to look up what everything was. I'd heard of MS in passing, but I had absolutely no idea what it was or what it meant.

It was an emotional time. I was young, in my mid-20s when I was diagnosed. I knew I eventually wanted to get married and have a family. I had met my future husband, Greg, but we were only dating off and on at that time. I remember thinking, “Is he even going to want to be with me? Who's going to want to marry me if I have MS?” I was terrified about how MS would affect my life and my future.

I learned very quickly that Greg wanted to be there for me and support me. We eventually ended up getting serious and then getting married. He's been an incredible support system. But at that time, when the diagnosis was raw, that was one of the first things I was really worried and upset about: "Who's going to want to be with me if I have this?”

I learned, of course, that there are treatments and ways to effectively manage MS. You can be fulfilled and have a full life if you are able to find the answers, the right support system, and the right specialists to help put you on the right path.

Eventually, I found the good in the diagnosis and have tried to make the best of everything. I've always been a naturally positive person, which helped me work through the changes in my life. It was clear to me that I could either stay at home and cry or I could problem-solve,  find solutions, and keep moving forward.

I went on to have a very complicated infertility journey and also a very complicated pregnancy. If I hadn’t received my MS diagnosis and subsequently learned how to research information about my health, I wouldn't have been the best advocate for myself through my other health journeys. Because of MS, I had already learned so much about the medical system and the process for advocating for my needs.

My pregnancy complications had nothing to do with my MS. Most women who have MS are actually protected from MS symptoms during pregnancy because of the changes to hormone levels. However, I experienced an MS flare-up after giving birth to my daughter, Mollie, and it was devastating. I had just been on bed rest for 17 weeks and spent 11 weeks inpatient in the hospital. And there I was, a month and a half after having her, having a flare-up. I kept thinking, "Oh my God, why is this happening? What medication am I even going to be able to take?" I hadn't been able to tolerate any of the treatments, and I was breastfeeding. How was I going to be able to take care of my new baby?

I was eventually approved to go on a new treatment. It was really hard and scary and overwhelming. But I did a lot of research and talked to other women in my MS Facebook group who had been on the same therapy, which made me feel more comfortable. Leaning into the MS community, asking questions, and finding support really helped me continue to push forward.

Each of these medical journeys I've been on have changed how I view everything. I'm truly so grateful and appreciative of every single day I have.

The hardest part of life with MS is the unknown. I’ve had to learn to navigate not knowing when something could potentially happen to change my life. I can’t predict a flare-up. I can’t predict if or when any of the flare-up symptoms, like blurry vision or difficulty walking, could end up being permanent. I can only control what I can control by doing what’s best for my body. And if I spend all my time worrying about the future, I won't be able to live in the moment and enjoy each day.

Remember, there is always hope. Keep moving forward. Reach out to others and connect and surround yourself with community. MS isn’t a death sentence. There are so many treatments, protocols, and ways to be able to help yourself and help your body in order to have a positive and fulfilling life.

Find the right doctor and establish a support system. There’s nothing more powerful than connecting with other people going through similar medical experiences as you're going through. We learn from each other, share tips and advice, and build relationships that empower us to keep putting one foot in front of the other.