I’ve participated in Bike MS, Meat Fight, Walk MS, and self-help group leadership. I write openly about my MS experience, I contribute regularly to MSAA’s blog MS Conversations, and I let my community, colleagues, and legislators know that I have MS. I’m happy to answer questions and have spoken to newly diagnosed people and family members quite a few times over the years. If I’m the only person they know with MS and they would like to chat, I’m there for them. They’ll have a unique MS experience, and I want to support them in their journey. I’m eager to encourage kinship, help where I can, and remove any cloak of shame regarding health issues.
That said... sometimes I get uncomfortable. When it feels like it’s putting me in a poster child position, I get emotional. Those are the moments when I am sad that I have MS and live a life where I have to deal with it daily.
While riding the Bike MS victory lap that celebrates and honors those of us with MS, I was proud to be there supporting the cause. I’m immensely grateful I’m doing well and can participate as an example of people living well with MS. I also got very anxious before the ride. People were looking at me, and they were cheering me on. Their kindness spurred a counterintuitive response in me.
My emotions went into overdrive with a mix of opposing feelings. I held back tears as I processed my feelings and tried to understand why it felt different from other advocacy efforts.
Sure, I felt like I was on display, which can be discomforting, but I don’t think that was it. I think it was because I recognized the magnitude of what participating means to me. I was overwhelmed, feeling simultaneous pride for participating in a cause I support greatly and sorrow for personally needing MS-focused philanthropy to give me hope.
Just reading this last sentence aloud while reviewing and editing this post makes me emotional. MS-focused philanthropy gives me hope, and I’m sad I need it.
At the event, I was glad to participate in the ride and relieved when it was over. I liked being back among everyone supporting the cause and blending into the crowd again.
Friends with MS have expressed their happiness with how well I’m doing and have told me they appreciate my advocacy efforts. One dear friend and mentor who’d lived with MS for at least 20 years longer than I had lovingly called me a poster child for MS. She saw my efforts as giving hope and representing the cause well, and I greatly appreciate that. I know my health is due to hard work and a lot of luck, and I hope to encourage and support others in any way I can. I also aim to learn and grow from every other person with MS I encounter.
I wasn’t unnerved when she used the term "poster child," because it was a one-on-one conversation, and I felt the love and admiration she exuded as she said it. I was honored to hold her regard, given how much she had comforted and inspired me through the years.
I’ve been living with MS and advocating for MS issues since 2008, and how I participate varies. I wish I could do more, but I consistently contribute in ways that align with my interests, abilities, energy level, and time available. There are plenty of ways to advocate, and it makes me feel good to give back to a community that has helped me so much. It’s bittersweet advocacy.
