Living Beyond the Diagnosis

Living with a chronic or terminal neurodegenerative disease like Multiple System Atrophy (MSA) is a battle fought on two fronts: the internal war waged against your own body and the external struggle of being understood in a world that can’t see your pain. It’s a reality many of us face, yet too often, the experiences remain unheard and unspoken.
This blog post stems from a heartfelt cry for understanding shared in a Facebook group for people with MSA and their caretakers by Carrie Busby Carpenter (Approved by Carrie) https://www.facebook.com/story.php?story_fbid=pfbid0nSc2nTqRXNzH7Kam1d7Zti5BY5jNfsCLmpTP9PqNqzPbCV1vUdHoDMNKbzGPQjrrl&id=100012235906130&mibextid=qC1gEa&_rdr earlier this week. It speaks to a frustration that resonates deeply with anyone enduring a terminal illness: the words and actions of those around us who, while often well-meaning, don’t truly grasp the reality of our situation.

“I didn’t ask for my body to fail.”
Chronic illness isn’t a choice, and yet society often treats it as if it were. People living with invisible diseases like MSA must navigate the impossible task of maintaining appearances while their bodies betray them. They work through the pain, push past the fatigue, and mask the fear—until they can’t anymore.
It’s a cruel irony that these invisible battles lead to visible judgments. Comments like, “Why did you get so fat?” or “Why don’t you just exercise more?” chip away at already fragile spirits. The misguided “advice” to try yet another diet, supplement, or trendy treatment doesn’t heal; it harms.
And then there’s the gut-punch phrase so many of us have heard: “It can’t be that bad; you look good.” A twisted compliment that invalidates the suffering hidden beneath the surface.

“Have you tried this? Have you tried that?”
Yes. We’ve tried it all. Every doctor’s appointment, every medication, every alternative therapy, every shred of hope has been grasped at with desperation. When you’re living with something incurable, there’s no option but to keep trying, even when it feels like screaming into a void.
But the effort takes a toll. It’s exhausting—physically, emotionally, and mentally—to hear the same suggestions over and over from people who don’t understand. What we need isn’t more advice; it’s empathy. What we need isn’t solutions we’ve already exhausted; it’s support to keep fighting this uphill battle.

“A nap won’t cure me, but it will help.”
Living with a disease like MSA means living in a body that demands more than it can give. Fatigue, pain, and a lack of mobility aren’t signs of laziness—they’re symptoms of survival. Medications that make us drowsy, hair that falls out, and the pharmacy on the nightstand are constant reminders of the reality we’re living.
We don’t need you to fix us. We need you to listen, to understand, to let us rest without judgment. Compassion is the greatest gift you can give someone who is already struggling to give themselves grace.

Before you speak, consider this:

1. Would you say it to someone with a cast or a wheelchair? Just because a disease is invisible doesn’t mean it’s less real. Treat invisible illnesses with the same sensitivity you would any visible condition.
2. Are you offering help, or are you offering criticism disguised as advice? If you want to support someone with a chronic illness, ask how you can help. Often, just being there—without judgment or unsolicited solutions—is enough.
3. Sometimes, silence is golden. When in doubt, focus on their struggle, not your opinions. Words have power, and they can either build someone up or tear them down.

Standing Together
If you’ve read this far, take a moment to think of someone in your life who’s fighting an invisible battle. They might be living with Multiple System Atrophy or one of the many other chronic or terminal conditions listed in the original post. These individuals don’t need pity; they need understanding, encouragement, and respect for the strength it takes to face each day.
Living with MSA—or any chronic illness—is a marathon, not a sprint. For those who love someone fighting this battle, know that your words and actions have the power to either ease the burden or add to it. Choose wisely. Show up. Be kind. And above all, never forget: sometimes the best thing to say is, “I’m here for you.”

~Coach~