Fighting the stigma of MS

By Caroline Craven as told to Hallie Levine

I found out almost 20 years ago, in 2001, that I had MS. I was only 35 years old, but I could not walk or see without help. I feel good today. It is so important for patients with MS to know that their diagnosis is not a death sentence. With the right treatments, the disease can be controlled and you can continue living 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 8-10 hours a day in an office with my sensory overload and fatigue. Before MS, I was a whitewater kayaker, mountain biker, and rock climber. Suddenly I was 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, lifehacks, and resources.

Why there is still a stigma

It has actually gotten better over the past decade, particularly among healthcare providers who better understand what it is like to live with MS. They now realize that treating MS involves more than just taking a pill or getting an injection. To be successful, people with MS need to learn life skills and receive support from the community. You don’t really know what it’s like to live with MS unless you’re in someone’s shoes. Some of us are relatively physically able and able to stay active, while others require 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?” Part of the reason it’s hard to understand is because there are so many unknowns about the course of MS there. When you first receive your diagnosis, you have no idea if your illness will be invisible to others, you will lose your coordination, or you will be confined to a wheelchair.

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

Challenging Misunderstandings

The best way to defend yourself against this kind of misunderstanding is to be open with those around you. For example, one of my biggest problems is sensory overload. Imagine you are standing in a room with strobe lights and sounds. This is how I often feel when I’m in a busy environment or interacting with others. I tell people my MS is like a battery that I have to recharge often. When I get too tired, I need to take a break and lie down quietly to reduce overstimulation. When I explain it like that, it helps people understand how it is for me.

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

How to stand up for yourself

The first step is to find a doctor you feel completely comfortable with. Once you’ve found your doctor, keep an ongoing list of questions and notes to take when you visit the doctor. So many of us are afraid to tell our doctor that our current treatment doesn’t seem to be working or that we’ve had a really bad week.

I also recommend keeping up to date with the latest medical news on the National Multiple Sclerosis Society website (nationalmssociety.org). This allows you to discuss promising new therapies with your doctor. You also need to make sure they are aware and on board of any supplements you are using or complimentary treatments.

Change your focus for your best life

Now, as a person and professional living with MS, my work takes me across the country to counsel and speak to help others with the disease live better lives. It brings back memories of my early career working with startup companies and is exciting and inspiring. The bottom line is that MS is a random, progressive disease. We as people with MS cannot control where it takes us. But we can focus on how to live our lives better.