Support: Look and You Shall Find
Last updated: February 2023
I was struggling to pull the infusion rack with me as we were traversing the many floors of the university hospital where I receive my MS treatment."I will be asking the questions, and you share as much or as little as you feel comfortable with. Almost there!" my neurologist informed us over her shoulder as she was hurrying along empty, barren corridors.
Discussing MS with future neurologists
I had agreed, accompanied by another MS patient receiving Tysabri, to answer questions about my MS to a class of future neurologists. Infusion in one arm and a clicking machine in the background, the experience was as surreal as it sounds. After some half-hearted participatory questions from the audience, a woman with bright red hair tentatively cleared her throat and asked "How… does it, you know… feel? How did the diagnosis change your life?" Crap.
Same condition, different experiences
I answered as truthfully as I could. The changing of plans, the idea of a different perception of self, a distorted view of "healthy." Then it was my co-infusion buddy's turn. Her experience? Completely different. Her MS was more aggressive than mine, but she had surrendered to the vulnerability of the disease. I had offered resistance to my new life, while she had (after some hysterical fits of crying 20 years back) taken a headfirst dive into the discomforts of the disease. We had two completely different experiences, yet, we share much of the same condition.
Lacking an emotional connection
What struck me wasn't how differently we experienced this disease; everyone's version of MS, both physically and mentally, is unique. It was the lack of empathy we couldn't feel for each other that bothered me. We could share experiences and stories, but on an emotional level, we had little to connect on. It might be obvious to some, but I had put trust in the idea that as long as I talk to someone who has MS, they would know my experience.
MS is more than appointments and prescriptions
Fast-forwarding a couple of months, I found myself at a dinner party with some new acquaintances. Most of us were total strangers but quickly found the (liquid) courage to open up about our lives in an authentic way. I shared some of my MS-war stories; someone recounted the time her mom almost died in a car crash. Last out was this woman who'd been quiet most of the dinner. She cleared her throat and told us about her journey battling cancer. The story was a heart-wrenching journey dealing with loss, uncertainty, shame, depression, and isolation. She didn't speak too much about appointments, or symptoms, but rather the raw emotion than underpinned every major turn of the disease progression. For a second, I forgot we didn't have the same disease, and connected over something other than prescriptions and symptoms.
The emotional side of MS
When I started engaging with the MS community online, I had a hard time finding my footing. I would read posts, articles, and watch videos of people talking about medications, symptoms, test results, and doctor's appointments. Not being able to talk about those experiences was never an issue for me. Knowing that I'm not the only one who knows what brain fog feels like didn't offer me any assurance, but instead increased frustration toward the disease itself. It felt nice to share practical information with other patients, but the emotional side felt like uncharted territory. It was either a violent outpour of unrestrained emotion or retelling of individual events, but rarely both.
Support can come from many places
I quickly realized that the problem wasn't the communal aspect; it was me not wanting to identify with it. Acceptance takes time and to feel that you belong to a community can be an integral part of that. But it doesn't have to be everything, as I have learned while listening to my new friend who battled cancer. The way to connecting and accepting doesn't exist locked up in a specific place: it can come from anywhere. But only as long as the focus is not only on the objective facts but more so on the lived experiences. I came to terms with the fact that some struggles and fights are easier to take on with other MS patients. It can sometimes be a fast track to empathy, knowing that someone can put themselves in your shoes. It doesn't mean we're all able to understand each other, but we know the fight against MS. There's power in that.
Our struggles are very human
But when somebody tells me, "I have no idea what that would be like to have MS," I can sometimes feel a twinge of frustration. No, they don't know what it feels like to experience MS. But so what? The struggle is very human - if you're willing to stop comparing hurt and connect on the very things that make us human, you can find belonging, diagnosis or no diagnosis.
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