What I Wish I'd Known I'd Known About Multiple Sclerosis

One woman’s take on staying strong, sane, and solvent.

by Jackie Zimmerman Patient Advocate

My MS diagnosis came as a complete shock. At 21, I’d never even had stitches, let alone any major medical issues. But that all changed in a millisecond when, in September 2006, a neurologist looked at me and said, “Multiple sclerosis.” It turns out, there was a reason I was experiencing numbness from the waist down.

On the drive home with my mom, as she steered our white Jeep through the Detroit suburbs, I felt speechless and dazed—like we were just going through the motions of existing. That was how my journey with MS began. Soon, it would involve navigating a whole new world: the healthcare system. And I quickly discovered that it was filled with twists, turns, and dead ends.

I’m 34 now and busy with my work as a writer, nonprofit founder, and graphic designer. But there are so many things I wish I had known on that drive home under the overcast Michigan sky—things that could have made the years so much easier, or at least less stressful.
Some I just needed to learn over time, the way a teenager gets better at making life decisions after living a bit. I also needed to get to know my MS, and how we would work together—or against each other. This was going to be a lifelong relationship, after all. It was an insight no one could have taught me

Here are some of the things I wish I’d known from the start.

For Best Results, Advocate for Yourself

The first lesson I learned was a pretty painful one: Except for me and my family, no one really cares about my health. As someone who had never really been sick, I thought the medical system would have my best interests in mind at all times. Not so. I quickly learned that I would have to be my own (and most determined!) advocate—every step of the way.

Sometimes this meant making uncomfortable decisions, like getting a second opinion. Sometimes it even meant disagreeing with medical advice. I think I’ve needed to advocate for myself most with regard to medications, and I’ve been on a lot. But when a doctor suggested I start cyclophosphamide to deter recurrence, I knew to take a stand. That particular drug was just too aggressive for my MS (though it may be right for others). I am the boss of my own body.

Be Kind to Yourself

Having MS can feel like a full-time job, especially when you’re fighting to be heard. And it can be exhausting! I now know to give myself permission to put down whatever I may have on deck for the day, if needed, and just revisit it later. Sometimes, even if it’s urgent, you have to take time and space for yourself. In 2018, I had my first relapse in eight years. So I cut back on a bunch of stressors in my life and let myself recharge.

Keep Asking Questions!

This goes hand in hand with being your own advocate, especially in the beginning. So often, doctors and nurses would say something that went over my head, but I wouldn’t ask them to explain what they meant because I thought I’d look stupid for not knowing. In the beginning, I didn’t understand what myelin was, or what it meant to be lacking myelin with MS. (It’s a protective sheath around nerve fibers.)

I also didn’t understand what they were looking for with biannual MRI scans. Now I know to ask doctors, nurses, the MRI tech, the insurance company, the home nurses... everyone! What is this? Why are we doing this? Questions not only give me power but help make me smarter. When I asked my neurologist to actually show me my MRI and share what he saw and what it meant, things changed.

Stay Smart Online

In the six months after my diagnosis, I spent hours online. I found scary story after scary story about people losing their mobility or their ability to talk. Some became bedbound. Was this what I was supposed to expect for the future? I was devastated.

What I didn’t realize then was that every individual’s experience with MS is unique; the level of disease severity and other aspects of the illness vary from person to person. Plenty of people with MS stay active and mobile for years.

If I’d known this, I wouldn’t have limited myself so much to only what I thought I could do in those first few years. I turned down bike rides because I was afraid my legs would be too weak. I refused festival tickets because I’d convinced myself I’d hold everyone back if lots of walking were involved. I know now that I should have been soaking up every moment that I was able to enjoy life on my own two feet!

MS Can Drain Your Bank Account, But There’s Help

It wasn’t until I was recovering from my first relapse and got billed for loads of tests that I learned about patient-assistance programs. Many hospitals and healthcare providers offer discounts and grants to people experiencing financial hardship.

Six months after my first relapse, I got charged $8,000 for an MRI—and that was after insurance had kicked in. I called the hospital assistance department and the bill dropped to $10. Assistance isn’t available to everyone, but it can’t hurt to make the call. And most pharmaceutical companies offer help for MS medications. I’ve definitely taken advantage of this over the years.

Anticipate the Hiccups—Practical and Emotional

Despite living in America, with a well-established healthcare system, a lot of things can go askew. With me, the wrong insurance was billed, a doctor wouldn’t see me because I initially saw a different doctor in his practice, and so on. The system is hardly hiccup-free, and I’ve spent hours on the phone trying to fix errors or answer questions to receive the care I need. It’s part of the “MS job.”

I’ll Be OK

Mostly, things work out. I now know that the setbacks are temporary. Whether it’s a physical or emotional issue, things are OK in the end.
Once, I opened my eyes in the morning and my vision was shaded. It was optic neuritis. But my vision came back. Leg numbness didn’t persist; I got feeling and balance back. Now I know that MS doesn’t have to prevent me from doing what most healthy people enjoy, like falling in love and heading to the roller derby track with my skates!

Jackie Zimmerman
Meet Our Writer
Jackie Zimmerman

Jackie Zimmerman is a multiple sclerosis and ulcerative colitis patient and the founder of Girls With Guts. Since diagnosis, she has blogged her IBD journey at Blood, Poop, and Tears. Jackie has worked hard to become a strong voice in the patient advocacy community. In her free time (what free time?!) she spends time with her two rescue pups, her husband Adam and plays roller derby. She’s online @JackieZimm.