When people reflect on my life, they likely paint a picture of a dedicated mom. They might highlight my creativity and acknowledge the effort I put into everything I do. It’s unlikely they would note my health struggles, as my chronic condition isn’t immediately visible. The only hint might be the discreet medical ID bracelet I wear under my watch or the occasional alarm on my phone reminding me to take my medication. To the casual observer, I seem perfectly fine.
Let me clarify: I’m not bedridden or disabled. However, I do live with a chronic condition—hypopituitarism—stemming from a surgery I underwent years ago to remove a tumor from my pituitary gland. My gland couldn’t be preserved, so I rely on a combination of costly medications to replace the hormones my body no longer produces.
You may wonder why this matters. Without my pituitary gland, often referred to as the “master gland,” my body doesn’t function properly. I take medication for my thyroid, another to combat early menopause, and additional pills for kidney regulation. Most critically, I take a medication to replace cortisol. This is where things become complicated. Normally, our bodies produce cortisol in response to stress or illness. If I fall ill, my husband must administer a shot of dexamethasone to prevent me from slipping into a coma. Yes, I carry these shots with me everywhere.
The most heartbreaking aspect of my condition is how it impacts my daughter, Emily. From a young age, she learned to call her dad on my phone in case I fainted. Now, at five, she’s hyper-aware of my health. If she sees me resting, she immediately asks, “Mommy, are you OK? Should I call Daddy?” It crushes me because I never envisioned a scenario in which my child would have to look out for me at such a young age.
Moreover, my illness limits my ability to care for her when she’s unwell. While I can manage minor ailments like a cold, more serious issues like strep throat or a stomach bug require me to maintain a safe distance. This inability to care for her during crucial times is a deep source of sorrow for me.
Our daily lives are also affected. We’ve had to skip birthday parties, family gatherings, and trips due to the risk of illness. Recently, we kept Emily home from school because another child had been sick. She cried for hours, longing to be with her friends. We even had to cancel a family vacation over concerns about infectious mosquitoes, which left her heartbroken.
As mothers, we strive to ensure our children are happy and healthy. Yet, I find myself inadvertently passing my anxiety onto Emily. She’s become overly cautious, obsessively using hand sanitizer and rushing to wash her hands when she returns home from school. When her grandmother leans in for a kiss, Emily seriously warns, “It’s cold and flu season, Nana.” I can’t help but feel a mix of pride and sadness.
Despite my friends and family frequently asking how I’m doing, I always respond with a smile, saying I’m fine. The truth is, I’m frustrated—not only am I grappling with my own health issues, but I’m also angry that Emily has to navigate this difficult reality alongside me. I live with a constant fear of getting food poisoning or encountering someone who may be contagious. Most distressing is the thought that one day, Emily may resent me for the limitations my illness imposes on her childhood.
This fear keeps me awake at night—the concern that she’ll tell me I ruined her childhood because she had to be the youngest caregiver or that she missed out on experiences because of my health challenges. And the thought of her potentially inheriting my condition is a heavy burden to bear.
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In summary, while my journey with chronic illness is challenging, it is equally about the impact it has on my daughter. I strive to find a balance between managing my health and nurturing her happiness, all while navigating the complexities of motherhood.
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