Sometimes a break is necessary to prevent caregiver fatigue
Periods of respite help me better care for my daughter with HAE
For most people, the news came as a shock.
During the 2021 Tokyo Olympics, the most decorated gymnast in the world, Simone Biles, made a startling announcement. Aside from experiencing mental fatigue, she was suffering from what gymnasts refer to as “the twisties”: a dangerous condition in which an athlete loses their sense of where they are in the air, preventing them from executing a safe landing. With a heartfelt public statement, she left the Olympics in the middle of the competition and started what would be a two-year break from gymnastics.
While most fans understood her reasons, naysayers thought her reasoning was ridiculous and openly called for the Olympian to push through. Many on the internet nicknamed her “the quitter,” even calling her a disgrace to her own country. Many social media platforms were evenly split between championing the athlete for her foresight or lambasting her for her inability to suck it up. Despite critics calling this move the end of her career, however, Biles doubled down on her need to step away.
In her triumphant return at the 2024 Paris Olympics, Biles won three gold medals and one silver, adding to her four gold and one silver she won at the World Games the year before. She attributes this success to her break to prioritize her mental health.
Sometimes, a much-needed break is the best course of action moving forward.
The reality of caregiver fatigue
When our oldest daughter, whom we lovingly refer to as Ladybug, was diagnosed with hereditary angioedema (HAE), I didn’t mind what it meant to be a caregiver: sleepless nights, multiple hospital stays and doctor visits, and a host of home infusions and needle sticks.
For a while, I focused all my attention on how my daughter was handling her diagnosis, flares, and setbacks. As a caregiver, however, I didn’t consider that all of these things affected me as well.
Although I’ve written many columns about the need for breaks, vacations, and finding small moments to take a respite, I rarely did any of it. Unfortunately, like Biles, I began to recognize in late 2024 that my capacity to handle “everything” was waning fast.
Like many, I couldn’t take a break from everything. But I learned quickly that pausing projects, a short hiatus in column writing, and finally taking my husband up on the help he’d incessantly offered helped relieve me of some of the dangerously building pressure.
Caregiving has its ups and downs. It has its many wins and heartbreaking losses. It has its championship fights, bell-ringing knockouts, and occasional draws. The most important thing to remember is that a small timeout is necessary for us to get back in the game.
In 2025, I’m excited about the new improvements in HAE medications, and I seek to have more interactions with our rare disease community. But most of all, I look to find ways to prevent caregiver fatigue so that I can be there for the fighter who needs me most.
Note: Angioedema 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 Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.
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