Unapologetically Me: Life with Multiple Sclerosis (MS) Doesn’t Come with an Apology
By: Brandon Matthew Deen, Sr.
I am Brandon, and I live with Multiple Sclerosis (MS), a chronic, unpredictable, and often invisible autoimmune disease that affects the central nervous system. I was diagnosed in 2016, but the signs appeared long before then. I deal with this disease every day, no matter where I am or what I am doing. Whether I am at work, with my family, or simply trying to get through another hot afternoon, MS is always in the background. This column isn't a plea for sympathy. It's a message to anyone who knows me, works with me, or crosses paths with someone like me: we don't owe you an apology for how we manage life with this disease.
Sometimes I need more time to process, react, and sit with what I'm feeling. That's not avoidance; that's fatigue. That's brain fog. That's my nervous system taking detours when people expect straight answers. MS slows me down in ways most people don't see, and if that makes you uncomfortable, I can't help you. What I can do is honor my pace and remind myself that I don't have to match anyone else's timeline to be valid or worthy.
Fatigue with MS isn't just feeling tired; it’s a deep exhaustion that hits abruptly. There are days I walk through the door after work and immediately collapse. Not because I'm lazy. Not because I don't care. Because my body is exhausted. I've fallen asleep next to my wife, my son, and my daughter while simply watching TV. MS doesn't care about timing or quality of family moments. I can't outwork it, outthink it, or ignore it without paying the price the next day or days later.
I don't like canceling plans. I don't like seeming unreliable. But when my symptoms flare up, I often don't have a choice. Sometimes I say no, not because I want to, but because the cost of pushing through is just too high. The guilt already weighs on me. Your judgment doesn't help. If I say no, not today, or maybe later, it's not about you. It's about keeping myself upright and safe. And that should be enough.
Yes, I take medication. Sometimes I don't. MS treatments aren't one-size-fits-all. I've taken pills that made me feel like I was on fire from the inside out. I've given myself injections that left bruises and welts. I've spent whole days wiped out after infusions, to keep this disease from gaining ground. And even still, people have said things like, "Have you tried changing your diet?" or "Don't you think you could reverse it naturally?" My medical choices are mine. I don't need permission or unsolicited advice. I've earned the right to decide what works best for my body.
