By Caroline Craven, 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 help. Today, I thrive. It is so important for MS patients 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 career in marketing – I couldn’t work in an office 8-10 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 that I could barely walk from my car to the parking lot.
I signed up for 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 a placebo. But since I was better than most people and certainly better than when I was first diagnosed, my neurologist joked that I should be an example for MS. I took his advice at face value: 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 , tips and resources.
Why there is still a stigma
The situation has actually improved over the past decade, especially among medical providers who have a better understanding of what it is like to live with MS. They now realize that there is more to MS treatment than just taking medicine or getting a shot. To thrive, people with MS need to learn life skills and gain community support. You don’t really know what it’s like to live with MS unless you put yourself in someone else’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 often get asked is, “Are you one of Jerry’s Kids?” One of the reasons why it is difficult to understand is that there are so many unknowns about the course of MS. When you are first diagnosed, you don’t know if your illness will be invisible to others, if you will lose your coordination, or if you will 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 audiences don’t see the part where these people struggle to walk from the parking lot to a store, or the sidelong glances they get when using their canes.
Challenging misconceptions
The best way to combat these kinds of misconceptions is to be honest with those around you. For example, one of my biggest issues is sensory overload. Imagine standing in a room with strobe lights and sound effects. This is how I often feel when I’m in a busy environment or interacting with others. I tell people that my MS is like a battery that I have to recharge often. When I’m too tired, I need to take a break and lie down quietly to reduce sensory overload. When I explain it like that, it helps people understand what it means to me.
In another example, many people with MS are temperature sensitive. It may not seem so hot to others, but it can tire you out, blur your vision, and give you balance issues. It’s important that your family, employers, and friends know about this stuff. You may need to tell them more than once for them to understand. Don’t be afraid to do this and ask for help when you need it.
How you can defend yourself
The first step is to find a doctor you feel completely comfortable with. Once you find your doctor, keep a list of questions and notes to run during your office visit. 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 dirty 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 should also make sure they know and agree with any supplements or complementary treatments you use.
Change your purpose for your best life
Today, as a person and expert living with MS, my work takes me across the country, consulting and speaking out to help others with the disease live better lives. It brings back memories from my early career working with start-ups, and it’s exciting and inspiring. Ultimately, MS is a random and progressive disease. As people with MS, we can’t control where this takes us. But we can focus on how to live our life better.