Learning to Live with MS and Cope with MS Symptoms
When I was diagnosed with Multiple Sclerosis on my 20th birthday in 1988, I tried to find answers. At the time, the resources were limited to books and all I found were frightening generalities with words like progressive and degenerative that stopped me in my tracks. Back then, not much was known about MS and without disease modifying drugs of any kind it was easy to feel hopeless. The World Wide Web as we know it, was about 8 years away and the learning opportunities were minimal at best. So my list of questions would remain unanswered and for years and I learned to ignore them. The answers scared me anyway, so it seemed like to only way to cope.
Most of us remember the day as if it were yesterday. We retell it over and over- the MS equivalent of “Where were you on 9/11 ?”. For some of us, that day struck with a shocking blow. For others, it happened after many frustrating years of question marks. Some of us continue to live in the limbo of symptoms and hunches with no firm diagnosis. No matter what the story may be, when you learn you have Multiple Sclerosis everything changes. And while each case of this disease is completely different, there are some things we all have in common. We all must learn to cope.
In addition to our version of MS being unique, we are unique people. We approach, respond, think and react differently to the world around us. No cookie-cutter example can tell us how to live with our MS. We can find suggestions for coping- tips, advice, and proven examples that may be helpful. And while these ideas may be comforting for some, they are not for everyone. At the end of the day it’s a “one of a kind” brain that hits the pillow and must wake every morning to confront a constantly changing reality.
This reality in flux is why learning about MS is so important and so many people that I have met over these two decades speak about their struggle to do so. While living with it, there is so much to learn. The amount of information we need to understand about our own unique MS is overwhelming. It is a constantly moving target we need to follow every step of the way. Every symptom, every change, we need to recognize, document and report on. We must develop a way to incorporate it into our daily lives in a way that allows us to continue on. We also need to stay connected to the medical advances and treatment options. We need to know what the options are for treating a specific symptom, in addition to the disease as a whole. What we have to learn changes constantly. If we don’t keep up with the learning curve then we can’t be our own MS advocate. It’s the only way to find control within the disease.
So, if learning is one of a few ways available to emotionally cope with MS, why is it that there are so few places to do so, particularly on the Internet? Don’t get me wrong, there are countless places to find out information on whatever we want to know, be it MS or otherwise. And most will agree the amount of resources in and of themselves are overwhelming. The sites that exist online, however reliable and effective they may be, are only succeeding at information-dissemination. With that, we can get from point A to point B very easily. But what if what you need to know is more complicated than a simple line? What if you need to understand the specifics of a new symptom in the context of the fear that it may be with you for the rest of your life? And you don’t want to know every other symptom that could, but may never happen to you. Navigating through this web of information to find out what you need to know and then learn and understand it in a meaningful way is next to impossible. Trying to steer clear of the information you don’t want to know makes the whole process something to avoid.
The good news is that there are a great many solutions to this challenge. I will write about living with and learning about MS monthly. I will describe the difference between getting information and meaningful learning. And I will talk about my experience in this challenging life of learning. I invite you to share with everyone how you experience learning about your version of MS and any tips or tricks that we might benefit by knowing. In addition to using learning as a coping mechanism, I also write to cope. I will discuss how the unexpected tool of writing, became a powerful way to cope with MS. I look forward to learning more about the different experiences we each have in a quest to further our knowledge of Multiple Sclerosis.
Amy Gurowitz is a blogger, educational designer and non-profit founder. She has been living with MS for more than 21years diagnosed in 1988. Her non-profit organization SoftServe Matters is devoted to providing a meaningful online learning experience. MSSoftServe is the first goal in this effort.