Learning to be present while living with MS

It’s funny how multiple sclerosis (MS) has a way of silencing me. Since my diagnosis in 2016, I’ve felt as if something else has been speaking, moving, and living through me. Although I’ve been present in my own body, it often feels like I’m simply waiting on the sidelines. Waiting for what, you may ask? Honestly, I may never know.

Maybe I’m waiting to feel like myself again, but what would that even feel like? Experiencing my first episode of optic neuritis at 14 years old blurred the lines for me at such a young age. The version of me that is living with MS has been the only one that I really know. I don’t remember life before losing my vision or dealing with a string of debilitating migraines.

Or maybe I’m waiting for my body to stop surprising me. Most days, my MS calls the shots and plans my days for me. In the last decade, I’ve rarely felt in control of my life. Each morning I wake up, and it’s like I’m watching a new episode of the latest TV series that has consumed me. Needless to say, I never know what MS may bring, adding another layer to the already complicated experience of living with a chronic illness. The uncertainty of new symptoms emerging, familiar ones worsening, or the disease progressing can create a profound sense of distress.

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There is something unsettling about watching yourself become a spectator in your own life. MS hasn’t changed the fact that I still make plans, have goals, laugh, work, make memories, and imagine what the future might look like. From the outside looking in, I may look like I’m moving forward. But internally, there are moments when it feels as though I’m waiting for my body to tell me what I am capable of that day.

MS has taught me that being present and fully engaged are not always the same thing. I can show up to a meeting while quietly calculating how much energy I have left. I can make plans while wondering whether my body will cooperate when the day arrives. I can say yes to something while already thinking about what I may have to give up afterward. Sometimes, simply participating in my own life requires more negotiation than anyone else can see. And that constant negotiating can be exhausting.

Perhaps that is what MS has silenced most: the ability to recognize my own presence. I’ve spent so much time listening to what my body can’t do that I sometimes forget to listen to everything it still allows me to experience.

Maybe one of the lessons MS has taught me is that I don’t have to remain on the sidelines. Even when an obstacle is standing front and center, there is still so much life to experience, moments to embrace, and living left to do.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.