Why It's Important to Empower Yourself with Information About Multiple Sclerosis
When I learned I had Multiple Sclerosis, I shed some tears and then rearranged my life. There were no FDA approved medications so the doctor told me to go home, rest and call if I had a flare up. It was a helluva way to start my MS journey.
Diagnosed in the dark ages of MS
Doctors provided little hope for patients to live a rich, full life.
I quit my job, gave up my apartment and moved back home with my parents. I was 28 years old and felt as if everything I worked hard for - graduating from a competitive school, being hired for an incredible job, and dating a man I loved - was all for nothing and that my dream would quickly vanish.
I silently prayed for researchers to find a cure, or short of that, a medication to help me feel better and get me back on my feet again.
Starting to research MS
It’s hard to imagine, but I spent a lot of time sitting in silence in those pre-computer days. I didn’t know what else to do. Then I decided to start writing letters to national MS organizations and did a lot of research at the library. Most of what I found was advice on coping mechanisms for the emotional side of MS, and where I could find local support groups.
I started reading periodicals about lesions, the brain and spinal cord, inflammation, myelin and the top 10 complaints of people living with MS. A whole new vocabulary was waiting for me and I was an eager student.
Fast forward to today
Fast forward to today where there’s a plethora of information about medications, studies, current research and reviews all coming at us at lightning fast speed. There are books, MS magazines, blogs, periodicals, MS focused websites, and a slew of MS organizations. My daily emails reveal so much important information that at times I feel guilty because there’s not enough hours in the day to read it all. My brain feels like it’s on fire, my cognitive skills are tested and my body warns me that enough is enough.
My prayers are being answered
But I am not complaining. Not at all. My silent prayers are being answered and I am thrilled. Being unable to keep up with information means there’s more hope and perhaps someday a cure. I am also grateful that credible information can be found within seconds, so that no one will walk in the same lonely, scared footsteps I did all those years ago.
Recently, I was fortunate enough to attend an event where I met brilliant researchers who took the time to explain in easy-to-understand language (science was never my strength) the MS medication they’re working on. Tears welled up in my eyes, and I made a point to thank every single one of them for taking the time to provide an explanation and also for the work they are doing. I felt the need to explain why I was thanking them, that I was diagnosed in the dark ages of MS, and what they were doing was an answer to a long-ago prayer. I think they were moved by my little speech. I sure hope so.
The landscape of MS is changing
The landscape of MS is changing and we are the recipients of that blessed change. I tell the newly diagnosed that despite their diagnosis, they are ironically blessed to be diagnosed at a time where there are choices they can make about medications. They may not feel blessed when I say that, but I believe they are.
It’s time for all of us to learn how to interpret the information we read, then carefully synthesize and discuss it with our medical team, friends and family, colleagues and members of the MS community. The time is now to use our brain and our voice to empower ourselves, to know what’s possible, and to grow as unique and deserving individuals.
Here is a sample of some of the websites I subscribe to:
- MedPage Today
- Multiple Sclerosis Trust
- Kaiser Health News
- Kaiser Family Foundation
- The Mighty
- Multiple Sclerosis Research News - Science Daily
- PCORI (Patient Centered Outcomes Research Institute)
- Accelerated Cure Project
- Society for Participatory Medicine
- Office of Disease Prevention and Health Promotion
- JAMA Network
Do you have a fear of needles and take medication that requires injection?