By Caroline Craven, as told to Haley Levine
I learned I had MS nearly 20 years ago, in 2001. I was only 35, yet I couldn’t walk or see without assistance. Today, I am thriving. It is very important for people 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 to live your best life.
After being diagnosed with multiple sclerosis, I had to reinvent my life. I had to give up on my marketing career – I couldn’t work in an office 8-10 hours a day due to excessive sensory fatigue and exhaustion. Before MS, I was a whitewater kayak, mountain biker, and rock climber. Suddenly, I found myself so exhausted that 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 taking a placebo. But since I was better off than I was when I was first diagnosed, my neurologist joked that I should be the 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, hacks, and resources.
Why is there still a stain
It has really improved over the past decade, especially among medical providers who better understand what it means to live with MS. They’ve now realized that treating MS involves more than just taking a pill or taking an injection. In order to thrive, people with MS need to learn life skills and receive community support. You don’t really know what it’s like to live with MS unless you’re wearing someone’s shoes. Some of us are relatively physically fit 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 a part of Jerry Kids?” One reason it’s so hard to understand is that 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, or 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 romantic view of it. Think of celebrities like Selma Blair. But the audience doesn’t see the part where these people have trouble walking from the parking lot to a store, or the side looks they get when they use their canes.
The best way to overcome these types of misconceptions is to be honest with those around you. For example, one of my biggest problems is sensory load. Imagine you are standing in a room with strong lights and an exploding sound. This is how I often feel when I am in a crowded environment or interacting with others. I tell people my MS is like a battery that I need to recharge often. When I feel very tired, I need to take some time and lie down quietly to reduce the sensory overload. When I explain it this way, it helps people understand what it’s like to me.
In another example, many people with MS are sensitive to temperature. It may not sound hot to others, but it can make you feel tired, blur your vision, and give you trouble with your balance. It is important that your family, employers and friends know things like this. You may have to tell them more than once so that they can understand. Don’t be afraid to do this, and ask for help when you need it.
How can you defend yourself
The first step is to find a doctor that you feel completely comfortable with. Once you’ve found your doctor, keep a running list of questions and notes to take when you visit the office. Many of us are afraid to tell our doctor that our current treatment doesn’t seem to be working or that our week is too hard.
I also recommend keeping up with the latest medical news on the National MS Society website (nationalmssociety.org). This way, you can discuss promising new treatments with your doctor. You also need to make sure they are aware of any complimentary supplements or treatments you are using and that they are on board.
Change your focus on your better life
Now, as a person and expert living with MS, my work takes me across the country, to consult and speak up to help others with the disease live better. It brings back memories of my early career, when I worked with startups, and it’s exciting and inspiring. The bottom line is that MS is a progressive, random disease. We, as people with MS, can’t control where it takes us. But we can focus on how to live our lives better.