Toward a new understanding of positivity and hope

If there were Olympic medals for complaining, I’d have an impressive trophy room by now.

For most of my life with Friedreich’s ataxia (FA), I didn’t realize I was “training” for that, because complaining had become second nature to me. I didn’t always do it loudly; it was often quietly, like a background hum filling the silence. It was easy to do, because there was always something to point to: my body not cooperating, my balance getting worse, things taking twice as long as I’d planned. I didn’t choose to be negative, but the frustration felt honest. Optimism, on the other hand, seemed unattainable.

It wasn’t that I didn’t want to see the bright side; it just felt dishonest to pretend things weren’t difficult. When someone told me to “look on the bright side,” it sounded more like a dismissal than advice, as if they didn’t understand the gravity of FA.

After years of expecting nothing good to happen, I’ve begun to realize that real optimism isn’t about pretending things aren’t hard. It’s about recognizing that they are and believing there might still be something good waiting despite it all. I can thank existentialism for opening my eyes to that. Honestly, it’s taken me a long time to understand, and I’m still learning.

Complaining can feel natural when life presents you with reasons to do so. It’s a release valve, and for those of us with FA or other chronic conditions, it can feel almost necessary. If we don’t voice our frustration, it can eat us from the inside. However, I’ve started to notice that constant complaining doesn’t make the bad moments any easier. It only makes the moments in between darker and lonelier.

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A better companion

Companionship is essential, and optimism makes us better companions. Nobody wants to spend time with someone who drags every conversation into negativity. I know because I’ve been that person — the one who sighs before answering and assumes the worst will happen. It’s not fun to be around, and it’s even less fun to be. I’m learning that optimism isn’t just good for those around me; it’s a relief for me, too.

I haven’t become a sunbeam of positivity — far from it. But I’ve begun to see optimism less as a personality trait and more as a survival tool. In life with FA, there’s no shortage of disappointments. Yet when I focus solely on those, I miss the chance to notice when something quietly goes right.

And things do go right. Little victories are everywhere, even more often than I used to notice. Maybe that’s what I was missing all along. Small surprises can only be seen if we’re willing to look up every now and then, instead of just down at the dirt. For example, a recent healthcare appointment I had dreaded going to ended with news of my improvement, rather than a decline. A November trip to rideATAXIA Dallas, which I feared would exhaust me, turned out to be invigorating. At my adaptive gym, I managed an accessible form of deadlifts that had felt impossible just months ago. These moments don’t erase the hard stuff, but they do help to balance it.

That doesn’t mean I don’t struggle. Some mornings, I wake up and my body feels heavy, or I’m reminded that FA doesn’t take breaks, and all that “look on the bright side” energy evaporates. In those moments, optimism feels like a foreign language I still can’t speak fluently. But I try anyway, haltingly and imperfectly, because I’ve seen how it changes things.

These days, I use the word “hopeful” more than “optimistic,” because hope feels more grounded. Hope changes things. It doesn’t change FA, but it does change me.

I think that’s the point: Complaining is easy, but hope is active. It asks something of you: to believe, even without proof, that things might turn out better than expected; that the world isn’t conspiring against you; that, in the end, you might surprise yourself. Lately, I’ve been surprised a lot.

There are moments that catch me off guard: a good conversation, a laugh that comes easier than it used to, a plan that goes almost as smoothly as I’d hoped. These aren’t miracles, but they’re close enough. They remind me that optimism isn’t naïve. It’s realistic because the bad stuff is temporary, and the good stuff is worth noticing.

So I’m learning to complain less — not because I’ve become a saint of positivity, but because I’ve started to understand that optimism isn’t about denying reality. It’s about adding to it, balancing complaints with possibilities.

That’s how things, even with FA, can still surprise you. They can turn out better than expected.

Note: Friedreich’s Ataxia News 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 another 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 Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.