Health & Wellness

MS Research and Advocacy: The Power of Participation

By Mykal J. Leslie
When I was a child, my mother worked a variety of part-time jobs; she rarely stayed at one job for very long. That is, until a friend offered her a position as caretaker for their relative who had MS. It was the first time I had ever seen my mother experience joy with work, and I could tell from how she discussed her job that it brought her a deep sense of purpose. It was the first time I could remember seeing my mother truly excited to go to work.
My mother and the person she cared for became close friends. Their relationship not only had an immense effect on my mother’s life, but also on mine. It was my first opportunity to learn about multiple sclerosis, its effects, and the diverse needs of individuals with MS. It also taught me the value of purpose-driven work and how drastically a person’s life can be altered by having an existential connection to his or her job. Undoubtedly, my mother’s interactions with this individual had a lasting effect on her, but my mother’s experience also sparked a passion in me for which I am eternally grateful.
In hindsight, it is no surprise that I decided to become a rehabilitation counselor – a profession dedicated to serving individuals with disabilities, with a focus on reducing environmental barriers to employment and inclusion. So, when the opportunity arose to join a research team working on a grant pertaining to the employment concerns of individuals with MS, it felt like a divine connection. Not only was it an opportunity for me to give back to someone who had such a profound effect on my family, it was also a chance for me to actively look at barriers that were obstructing access to a fulfilling vocational experience. I had yet to make the connection at the time, but I learned the key to discovering my own meaningful experience with employment was in helping to identify and remove barriers keeping people from a gratifying work experience.
Luckily, our research team had several decades of experience in researching employment concerns for those with MS. We knew that the best way to start this research project was to talk to people with MS. Because of our research topic, we were able to end the study by checking in with the same people we spoke to during the start of the project. These people were essential in helping to interpret our research findings. This collaboration was important to us, because our research team was able to effectively serve and advocate for those with MS because we knew we were representing their best interests. Also, within our role as researchers, there exists the unique opportunity to serve as an activist who helps bring about needed changes in the lives of the target constituency group.
A critical facet of research projects comes once the work is done and then presented to people. This is called knowledge translation. This ensures that the significant findings and implications from the research are given, and properly explained, to the people who can use them most. In the case of our study, that meant distributing information locally, regionally, and nationally to individuals with MS, and rehabilitation and other medical professionals.
I had the distinct privilege of presenting our research findings to audiences across the country. This meant that I was responsible for the  knowledge translation stage of our research, a process that can be particularly anxiety-provoking. I had to find a way to properly represent the very unique and diverse group of people with MS, in a way that made sense, to a group of individuals who often have a varying degree of knowledge about the challenges of MS. Needless to say, I did not take this task lightly.
These different presentations are memorable experiences. I was  privileged to meet a lot of special people along the way, but one specific conference does stand out.
I was presenting to a group of rehabilitation professionals and was lucky enough to have a good friend of mine show up by happenstance. After the event, she stayed to chat and introduced me to a colleague whom she had brought along. This was a young woman recently diagnosed with MS who worked as an administrative assistant. She had been in college, working toward a pre-med degree, but her diagnosis forced her to withdraw from the program. It was a very difficult decision, but because of the intensity of her fatigue and other symptoms, she decided she was unable to meet the stringent program demands.
She had “tagged along” to the conference as an opportunity to get out of the office and learn more about the rehabilitation field. She was unaware that one of the presenters would be discussing MS. Because she was the only person among her family and friends with MS. She was stilling learning alot about her diagnosis. She told me how effective it was to hear the stories of others with MS. She gave me her insight into the barriers, concerns, and frustrations experienced by many people with MS. She was also able to connect with the specific stories about how fatigue has been a significant barrier to so many others, and how many people have had to leave a “dream” career to pursue other lines of work.
I was honored that I had a chance to share the voices of people with MS, but I couldn’t help but think how much more powerful it would have been if this young woman had been able to hear directly from the sources – first-hand accounts about the obstacles and challenges they faced, also the successes and accomplishments they had made.
I later found out that she decided to pursue a degree in rehabilitation counseling, so that she herself could be part of the movement to remove barriers to work and wellness. She felt empowered by the stories she heard and was now driven to empower others.
I will always remember that young woman, as well as countless others, for the valuable lessons I learned from their stories. What this process highlighted for me was that the key to MS “knowledge translation,” activism, and advocacy is the active participation of people with MS. Without the participation and dedication of thousands of individuals with MS, our research project would have never happened and this young woman would not have been able to have her experiences normalized through the stories. Now, through sharing her story and experiences, she will undoubtedly open doors for many others who may be going through the diagnosis process and feel isolated like she did.
Whether it is making sure that those with MS are heard during the research process; becoming a peer supporter to others; participating in awareness and advocacy efforts to better highlight the barriers for people with MS; or even becoming a caregiver or rehabilitation professional, there are numerous avenues for people with MS. There are also numerous avenues for those whose lives were touched by someone with MS, like myself and my mother, to participate in advocacy and activist movements for MS.