I wrestled with finding a gentle way of approaching this topic and couldn’t for the life of me find one. So let’s dive right in, shall we?
What is the point of putting on a front all the time? We live in a society where filtering photos is as normal as using toilet paper, but I have come to find peace and freedom from just laying it all out there in the open. All cards on the table: No filtering, no airbrushing, no sugarcoating the story of life with multiple sclerosis (MS) to sound more glamorous and spectacular.
What is the point of filtering our lives? We not only give ourselves a false reality; for those we are trying to connect with, we’re contributing to a fakeness manufactured to fit what we’re taught is the right way of doing things.
Today I’m sharing three ways transparency has allowed me to live a deeper truth in my life with MS.
A nurse once asked me during my first infusion of Rituxan (prior to switching to my current disease-modifying therapy, Tysabri) if I needed anything prescription-wise to fight constipation. My immediate response was, “I’m perfect in that department. I juice so much that, believe it or not, I can’t trust a fart nowadays.”
It’s the truth, and she laughed. Why not make them chuckle, right? Laughter is such a powerful medicine.
We have to learn to stop filtering life. It’s very hard to do now because we are in a world full of young entrepreneurs and brand ambassadors who are building up their businesses to create a stable, secure income and impact. But from a nonsales perspective, by not filtering and pre-positioning our lives for the world to see, we welcome a world of reality, truth, honesty, and empowerment that is stronger than a Snapchat filter of a duck-faced selfie. We have so much more to offer.
When it comes to living with a disease like MS, what is really underneath it all? Pain, frustration, questions, doubt, fear, love, charisma, quirks, acceptance, insecurities, passion, drive, understanding, and joy. This is what drives our inspiration. People living life, going through hell and back to fight against something. People standing up for what they believe in.
Sharing these moments can help us connect with each other. Every MS journey is different, but we have our diagnoses and many shared experiences in common. By not being honest and open, we’re not allowing ourselves to make those connections.
I have met so many people fighting the battle against MS, and yet so many seem to walk a road with shame. They feel ashamed to have this illness and to speak freely about it. I suppose this may come from a generational belief that it’s unbecoming to share the most personal aspects of your life. But I’ve found freedom in being transparent, because if there is nothing to hide, then there’s nothing to feel shame about. The more we embrace our disasters, the faster we can shift to normalizing the not-so-pretty parts of life.
You don’t have to have a flashy Instagram to start sharing your experience. You don’t need a website or a blog. You can simply start to break the shame chain by talking. Share your day with a friend. Explain your struggles. Take a chance and put it out there, and take those baby steps if needed. Nobody is asking you to go streaking in your neighborhood screaming your deepest, darkest insecurities. Start small and watch how your own feelings of yourself change. It all comes back to how we face it. What we do with it and how we rebuild it into something beautiful and honest can be the key to living an unfiltered life with MS.
MyMSTeam columnists discuss multiple sclerosis from a specific point of view. Columnists’ articles don’t reflect the opinions of MyMSTeam staff, medical experts, partners, advertisers, or sponsors. MyMSTeam content isn’t intended as a substitute for professional medical advice, diagnosis, or treatment.