How an Observational Study Helped Me Find My MS Self
I advocate for multiple sclerosis research. I am constantly preaching the gospel of the importance of participating in any way you can. Clinical trials are not the only way to give back, but sometimes that is what is emphasized the most. Yet, it was my participation in an observational study that had the greatest effect on me. It forced me to really think about feelings. Each month when I met with the clinician, I was faced with a lot of questions that I would normally consider to be easy. How hard could it be to say "well" or "5" or "rarely"? As it turns out, it was a lot harder than I thought.
A self-esteem study for a relatively new MS drug
I was asked to participate right after I agreed to donate extra vials of blood for the same drug. After two lumbar punctures, the idea of answering some questions was appealing. No big deal. I was in for a surprise. This self-esteem questionnaire challenged me to think about my MS in a different way. It challenged me to go into more detail and to pay more attention to how I was living my daily life. I was faced with multiple sclerosis issues that I glossed over or ignored. In the desire to give the best, most accurate information possible, I learned a new language to describe how I felt. It was one with more depth and honesty.
I consider myself a middle-of-the-road person living with multiple sclerosis. By that, I mean my existence is definitely affected by this chronic illness. I have good days and bad days like anyone else, but my good days are not so good that I can do any sort of MS walk and not so bad that I find myself in distress. I feel guilty at both ends. I am able to live life with minimal assistance, but I cannot climb mountains like many of my Colorado cohorts who participate in charity hikes. It was in this place that I tended to minimize how multiple sclerosis affected me. My problems seem silly compared to those dealing with primary progressive multiple sclerosis (PPMS) and I wanted to put on a brave face for those who were living life without restraint.
Being honest with myself about the daily impact of MS
When I was face-to-face with my questioner, I could not fake it. I did not want to fake it because I felt that I owed others more than I owed myself. To be honest for research, I had to be honest with myself. When I was asked about pain, I realized that it did not have to be debilitating. The pain I felt daily did not need to be diminished because I was comparing myself to what I thought others experienced. I had to think about how sad I felt about having multiple sclerosis. Maybe I wasn't overwhelmingly sad, and that is okay. What symptoms did I have regularly? How did I feel about them? All of these questions about how I felt. All of these questions about me, me, me.
I was in denial
It took me until the end of my time with Nicola to understand that my problem was not in answering the questions. The problem I had was me. I did not want to focus on me and my problems. I was in denial about my pain. In denial about how my life was affected. I was in denial about how much multiple sclerosis hurt me in body and mind. The spirit was willing, but the mind had a blindspot. It was only through a desire to help others that I was able to help myself and not compare my pain to anyone else's pain and decide that mine didn't count.
Learning not to compare myself to others
I learned important lessons from that study participation. I learned to acknowledge and live better with my own multiple sclerosis. I was able to make peace with my middle-of-the-road MS. experience. I made friends out of my symptoms because I admitted they affected me. I found and learned to respect my own feelings about being a person living with multiple sclerosis. It set me on the road to learning more about me.
How well do people around you understand MS?