It’s not my job to be a peacemaker as someone living with Huntington’s

There is a particular kind of exhaustion that comes from being sick and still feeling responsible for everyone else’s comfort.

It is one thing to manage Huntington’s disease. It is another thing entirely to manage the emotions, assumptions, awkwardness, and reactions that can swirl around it. Sometimes I walk into a room already carrying enough: my body, my symptoms, my energy level, my worries, my plans for getting through the day. That is a heavy load when you are already the patient.

For a long time, I didn’t have language for this. I just knew that I often left certain interactions feeling depleted in a way that had nothing to do with chorea, fatigue, balance issues, or the usual realities of Huntington’s disease. I felt drained because I had slipped into another job without even realizing it. I had become the peacemaker.

I was the one smoothing over discomfort. I was the one reassuring people who were unsure how to respond to me. I was the one trying to make conversations less tense when someone said the wrong thing. I was the one offering grace when people stared, doubted me, questioned my diagnosis, or treated me like my illness was somehow harder for them to witness than it was for me to live through.

There is a strange loneliness in that.

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People don’t always realize how often those of us with Huntington’s are put in this position. We are expected to explain without sounding angry. We are expected to educate without making anyone defensive. We are expected to be vulnerable without being “too much.” We are expected to share our truth in ways that are palatable, digestible, and inspiring.

And if we are not careful, we can start believing that this is just part of being a “good” patient.

I have felt this pressure in doctors’ offices, in professional spaces, at family gatherings, in friendships, and in public. I have felt it when someone looked uncomfortable around my symptoms and I instinctively tried to ease their tension. I have felt it when people asked intrusive questions and I answered more gently than I felt, because I did not want conflict. I have felt it when I was the one dealing with fear, grief, and uncertainty, yet somehow found myself comforting other people because they didn’t know what to say.

It can make you disappear in your own story.

When you are always trying to calm the room, you can lose touch with what you need. You can become so focused on helping others process your illness that you forget to process it yourself. You can become so skilled at reading the emotional temperature of everyone around you that you stop checking in with your own body, your own heart, your own limits.

That is not peace. That is survival.

Living with Huntington’s has taught me something important. I cannot heal in spaces where I am always performing emotional labor for everyone around me. I cannot thrive if I am constantly translating my pain into something softer, neater, and more comfortable for other people. And I should not have to earn compassion by being endlessly pleasant about what I am going through.

These days, I am learning a different kind of peace. Not the kind where I keep everyone else calm, but the kind where I stay connected to myself. The kind where I let silence be silence if I do not have the energy to fill it. The kind where I allow people to sit with their own discomfort instead of rushing to rescue them from it. The kind where I answer what I want to answer and leave the rest untouched.

That has been freeing.

It has also been uncomfortable, because when you stop peacemaking, people notice. Some are surprised. Some may even see it as distance or attitude. But boundaries often disappoint people who benefited from your lack of them. I’ve had to remind myself that choosing not to overfunction is not cruelty. It is maturity, self-respect, and wisdom.

When you live with Huntington’s disease, there is already so much to navigate. If you are the patient and the peacemaker, I want to say this gently: You are allowed to put down that second job. You are allowed to be honest. You are allowed to be tired. You are allowed to let other people do their own emotional work. You are allowed to need support without packaging your pain in a way that makes it easier for others to consume.

And you are still a good person if you stop trying to hold the whole room together.

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.