By Caroline Craven, as told to Hallie Levine

I learned I had MS almost 20 years ago, in 2001. I was only 35, yet I couldn’t walk or see without assistance.  Today, I’m thriving. It’s so important for patients with MS to know that their diagnosis is not a death sentence. With the proper treatments, the disease can be controlled, and you can continue to live your best life.

After my MS diagnosis, I had to reinvent my life. I had to give up my marketing career — I couldn’t work in an office 8 to 10 hours a day with my sensory overload and fatigue. Before MS, I was a whitewater kayaker, mountain biker, and rock climber. Suddenly, I found myself so exhausted I could barely walk from my car to the parking lot.

I enrolled in a 3-year, double-blind study at the University of Southern California for a T-cell vaccine.  After the study, I was told I was on the placebo. But since I was doing better than most and definitely better than when I was first diagnosed, my neurologist joked that I should be a poster child for MS. I took her advice literally: I became a certified life coach and created a blog, GirlwithMS.com, to provide helpful information on how to live better with MS, including recipes, life hacks, and resources.

Why There’s Still a Stigma

It’s actually gotten better over the last decade, especially among medical providers who better understand what it’s like to live with MS. They realize now that treatment for MS involves more than just taking a pill or getting a shot. In order to thrive, people with MS need to learn life skills and get community support. You don’t really know what it’s like to live with MS unless you walk in someone’s shoes. Some of us are relatively physical and able to stay active, while others need wheelchairs.

Unfortunately, the general public still doesn’t know much about MS. People confuse it with muscular dystrophy, for example — one of the questions I get asked a lot is, ”Are you part of Jerry’s Kids?” One reason that it’s tough to understand is because there are so many unknowns about the course of MS. When you first get your diagnosis, you have no idea if your illness will be invisible to others, you’ll lose your coordination, or if you’ll be confined to a wheelchair.  

Even when people know what it is, they often have a romanticized view of it. They think of celebrities like Selma Blair. But the public doesn’t see the part where those people have trouble walking from the parking lot into a store, or the sideways glances they get when they use their cane.

Challenging Misconceptions

The best way to push back against these sorts of misconceptions is to be straightforward with those around you. As an example, one of my biggest problems is sensory overload. Imagine standing in a room with strobe lights and sound blasting. That’s how I often feel when I’m in a busy environment or interacting with others. I tell folks that my MS is like a battery that I need to recharge often. When I get too tired, I need to take a time out and lie down in quiet to cut down on the sensory overload. When I explain it like this, it helps people understand what it’s like for me.

In another example, many people with MS are sensitive to temperature. It may not seem that hot out to others, but it may cause you to feel tired, make your vision blurry, and give you trouble with your balance. It’s important for your family, employers, and friends to know things like that. You may have to tell them more than once so they can understand. Don’t be afraid to do that, and to ask for help when you need it.

How You Can Advocate for Yourself

The first step is to find a doctor you feel completely comfortable with. Once you’ve found your doctor, keep a running list of questions and notes to run by them when you have an office visit. So many of us are afraid to tell our doctor that our current treatment doesn’t seem to be working or we’ve had a very cruddy week.

I also recommend keeping up with the latest medical news on the National Multiple Sclerosis Society website (nationalmssociety.org). This way, you can discuss promising new treatments with your doctor. You also need to make sure they know about and are on board with any supplements or complimentary treatments you use.

Change Your Focus for Your Best Life

Now, as a person and expert living with MS, my work takes me across the country, consulting and speaking to help others with the disease live better. It brings back memories of my early career, when I worked with startup companies, and it’s exciting and inspiring. The bottom line is that MS is a random, progressive disease. We, as people with MS, can’t control where it takes us. But we can focus on how to live our lives better.