Huntington’s caregiver goes from burnout to reclaiming her identity

Hannah Remillard, right, with her mom, Terresca “Mama T” Remillard. Hannah became her mother’s caregiver at the age of 14. (Photos courtesy of Hannah Remillard)

This is Hannah Remillard’s story:

A typical 14 year old would just be starting to find their own identity and individuality. But for me, that’s the age when I became my mom’s primary caregiver. Instead of going out, exploring, and experiencing new things, I was staying home and trying to help my mom maintain her identity as her Huntington’s disease progressed.

Between caregiving, school, volunteering within the community, and my part-time job, I had no energy left for anything else, especially myself. My teenage years became a blur of taking Mom to appointments, helping with everyday tasks, attending events, and navigating our changing family dynamics. It seemed like all these different roles were thrown at me. I became like a parent to my mom, as well as a housekeeper and a source of support for everyone else. I felt like I had to be the rock that held our family together. My entire identity became what I call “Caregiver Hannah.”

Check out more of Hannah Remillard’s story in Chapter 13 of the book “Positively Rare.”

It took burning out and being admitted to a mental health facility during my senior year of high school for me to realize that having only the identity of a caregiver simply wasn’t sustainable. I began to put minimal effort into self-care — just enough to feel like I could survive one day at a time. But it wasn’t until my mom went into a care home when I was 20 that I finally allowed myself to try to find out who I was and what I enjoyed in life outside of caregiving.

It’s been about a year and a half since then, and I still haven’t fully discovered who I am. But I’m OK with that because I now have the time to do so. I’m taking back control and finding my own identity and purpose in life. It’s both exciting and terrifying, but I’ve come to realize that everyone deserves an identity outside of Huntington’s disease.

Caregiver Hannah will always be a part of my identity, and I’m proud of that. But she will no longer have the power to be my entire identity.

In recognition of Huntington’s Disease Awareness Month in May, the Huntington’s Disease Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by Huntington’s, written in their own words. Follow us on Facebook, Instagram, or X for more stories like this, using the hashtag #HDSpotlight, or read the full series.