31 Days of CF: Balancing Advocacy and Self-care

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by Bionews Staff |

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31 Days of CF

Photo courtesy of Chloe Lussier-Labelle

Day 19 of 31

This is Chloe Lussier-Labelle’s story:

Hi! I’m Chloe Lussier-Labelle. As a 32-year-old with cystic fibrosis in Canada, I try to make the most of every moment, but my hardest fight has been growing old with CF. I feel so lucky and grateful for every year of life, but it comes with its challenges. I realize our world is not made for the grey zones of chronic illness: not always fully disabled, but never fully-abled either.

My biggest struggle isn’t my physical health deteriorating, but rather everything else required to stay alive: disability insurance, medication coverage, access to treatments like Trikafta, or even working full-time. My most recent challenge has been trying to start a family, as fertility centers are not prepared for the risks of an aging CF population.   

This has taught me the importance of speaking up for my health. I’ve used my voice to push for access to Trikafta and phage therapy. I taught myself not to be afraid to ask questions when I have doubts and to ask for help from doctors, politicians, and the CF community. Some causes are worth the fight, and their benefits impact others with CF. I’m proud to be a CF advocate.

But I’ve also learned to realize when to take a step back. These struggles can become overwhelming and all-consuming, so it’s important to take care of myself physically and mentally. Sometimes it’s worth making sacrifices to be happy, like when I decided to work part-time since full-time was taking its toll on my health. I try to appreciate what I have, and not let CF be the only thing my life revolves around.

I think the key is balancing both advocacy and self-care, and I encourage this balance for all CF warriors.

Cystic Fibrosis News Today’s 31 Days of CF campaign will publish one story per day for Cystic Fibrosis Awareness Month in May. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofCF, or go here to see the full series.