When being able to function is a moving target

There was a time when I measured a good day by how closely it resembled my old life.

Could I move fast enough? Think clearly enough? Get everything done on my to-do list? Look “normal” enough in public so that no one stared too long or asked if I was OK?

For a long time, that was my measuring stick, but if I’m being honest, it set me up to feel like I was always falling short.

Recommended Reading

February 3, 2026 News by Marisa Wexler, MS

Huntington’s treatment safely slows disease over 9 months in early trial

Responding with honesty

Living with Huntington’s disease has taught me many hard lessons, but one of the biggest is this: Functioning is not a fixed destination. It is a moving target.

What I could easily do a few years ago may take more planning today. What feels manageable this month may feel overwhelming next month. Some mornings, I wake up feeling strong, focused, and steady. Other days, my body and brain have their own plans. That used to make me feel like I was failing. Now, I’m learning to see it differently.

I used to think functioning meant consistency. I thought it meant being able to do the same things the same way every day. But Huntington’s doesn’t work like that. Symptoms shift. Energy shifts. Mood shifts. Balance shifts. Even confidence can shift from one hour to the next.

Some days, I can handle phone calls, errands, writing, and a long conversation. Other days, one appointment can take everything out of me.

I remember a moment when this truth really hit me. I had planned a full day, but I was already tired when I woke up. My body felt heavy. My focus was off. I was frustrated before the day had even begun because in my mind, I was comparing myself to a version of me who could push through anything.

I kept hearing that inner voice: “You should be able to do this. You used to do more than this. Why is this so hard?” That comparison stole my peace before I even gave myself a chance.

At some point that day, I had to stop and ask myself a different question: not “What’s wrong with me?” but rather “What does functioning look like for me today?” That question changed something in me, because on that day, functioning didn’t mean completing every task. It meant getting dressed, handling what was most important, resting before I crashed, and choosing not to shame myself for having limits. It meant adapting instead of pretending. It meant listening to my body instead of fighting it all day.

That was a good day, not because I got everything done, but because I responded to myself with honesty.

I think many of us living with Huntington’s disease carry invisible pressure to perform wellness for the comfort of others. We feel pressure to prove that we’re OK, that we’re still capable, and that we are trying. And when symptoms fluctuate, it can feel like we have to explain ourselves all over again.

There is real grief in recognizing that your best may look different now. There is grief in needing more rest, support, planning, and recovery time. There is grief in remembering a version of yourself that moved through the world with less effort. But there can also be wisdom there.

I’ve learned to measure good days differently now. A good day might mean I kept my anxiety from spiraling, or made it to an appointment and came home without judging myself for needing to lie down. A good day might mean I spoke kindly to myself when my symptoms were visible, or asked for help instead of pushing myself into exhaustion.

Sometimes a good day is productive. Sometimes it’s peaceful. Sometimes it’s simply about surviving, and that counts, too.

I’m also learning that functioning isn’t just about what is seen. People often measure functioning by output: how much you accomplished, how much you earned, how social you were, how polished you looked. But there is so much effort happening behind the scenes when you live with Huntington’s.

So now, when I notice that I’m comparing myself to my past self, to someone else, or to some other impossible standard, I try to come back to the truth that I’m living in a changing body, not a failing one. I’m adapting in real time. I’m learning new ways to live, work, rest, show up, and honor what is real.

Functioning is a moving target, yes, but it doesn’t mean that I’m losing. It means that I’m learning how to aim differently. And, on this journey, that kind of wisdom is its own strength.

Note: Huntington’s Disease 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 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 Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.