I’ve been living with Relapsing-Remitting Multiple Sclerosis for most of my adult life. Around our house, we call it “Daddy’s Mad Cow.”
Fortunately, my case is well-managed and most of my symptoms are ones that others cannot see, but it can be unpredictable and make life more difficult than otherwise about the edges. I’ve faced a few exacerbations that were real challenges, but they’ve given me the opportunity to develop my coping skills.
As with most who have MS, I lived with a grab bag of shifting, seemingly random neurologic symptoms for years before they identified what it really was. But upon my diagnosis, I turned my training as a research methodologist to my own condition. As I had done before, I made myself the center of another single-subject experiment, determined to systematically find what worked (and what didn’t) for my case. It’s always important to understand the latest peer-reviewed research in the area. But since MS is such an idiosyncratic disease, I’ve found that an important supplement to fighting my own battle is to use the tools of the scientific method to my personal advantage.
That means researching and testing various coping strategies and treatments as my very own experimental guinea pig. It also means scrupulously monitoring my condition, along with my context and surrounding events, then analyzing those data and carefully putting new strategies into action. I’ve designed processes that make this relatively effortless and part of my daily routine. Knowing myself and my world is the foundation to building a better life strategy.
MS is a moving target. (Really, what isn’t?) It’s idiosyncratic and its presentation shifts dramatically and without warning. It’s not enough to achieve some personal milestone and then rest on your laurels. To keep the progress you’ve gained requires consistent, ongoing work. In a fast moving world, you still have to work to maintain what you’ve got.
My life is a critically observed, agile experiment in thriving with a chronic condition. From time to time, I post insights from this personal odyssey to my blog: living with a chronic condition, tips I’ve discovered for coping and improving my quality of life, and how I use careful data collection and analysis to make better sense of it.
In my spare time, I’m building a smartphone app (called “Chronic Cow”) that allows others to track the subjective experience of their chronic conditions and associate those dimensions with treatments, strategies, environmental factors and life events. (But please be patient here, this is a side project and a labor of love.)
Based on my experience with Multiple Sclerosis and my expertise as a social psychologist, I also speak to groups about living productively with MS (and other chronic conditions), maintaining a strong outlook, and building our personal and professional relationships.
• “Living with a Mad Cow: Managing the Experience of Chronic Illness”
• “Happy with a Mad Cow: Strategies for Staying Strong”
• “A Herd of Mad Cows: Living Together & Supporting One Another”