If you were to describe my life, you might say I’m a devoted mother. You’d likely highlight my creative spirit and my relentless work ethic. However, I doubt anyone would perceive me as being unwell; when people see me, they typically notice a vibrant individual. The only hints of my condition might be my medical ID bracelet discreetly tucked under my watch or the occasional alarm on my phone reminding me to take medication. Most would never guess that I struggle with a chronic illness.
To clarify, I am not disabled, but I do manage a persistent health issue that has become an integral part of my life. I have hypopituitarism, a condition that emerged after a surgery a few years ago to remove a tumor from my pituitary gland. Unfortunately, my gland was irreparably damaged, meaning I must rely on a cocktail of costly medications to substitute the cortisol and hormones my body can no longer produce.
You might wonder why this matters. Essentially, without my pituitary gland—often referred to as the master gland—my body struggles to operate normally. I need various pills to manage my thyroid, prevent early menopause, ensure proper kidney function, and most crucially, to replace my lost cortisol. This last medication introduces complications; when I become ill, my husband must administer a shot of dexamethasone to prevent me from slipping into a coma. It’s critical for me to carry these emergency shots with me at all times.
The most painful aspect of my condition is how it affects my daughter, Lily. From a young age, she has been acutely aware of my health struggles. At just three years old, we taught her how to reach out to her father on my cell phone in case I lost consciousness. Now that she’s five, the situation hasn’t improved. If she catches me sitting quietly with my eyes closed, she immediately goes into panic mode: “Mommy, are you OK? Should I call Daddy?” Each time, my heart aches.
When I gave birth to her, I never envisioned a reality where she would have to care for me, especially at such a young age. Compounding my worries, I often find myself unable to care for her when she is unwell. While I can manage minor ailments like a cold, anything more severe—strep throat, pink eye, or a stomach bug—means I must keep my distance to avoid a hospital visit. The emotional toll of not being able to support her during her times of need is one of the hardest things I’ve ever faced.
This illness doesn’t just impact our home life; it also disrupts our social engagements. We’ve missed countless birthday parties, church events, and outings because we can’t risk exposure to illness. Just recently, we had to keep Lily home from school when another child was sent back after being sick, which left her in tears because she wanted to play with her friends. Our planned vacation was also canceled due to concerns over infectious mosquitoes, which broke her heart.
It’s never easy to see your child’s disappointment, particularly when you’re the cause of it. As mothers, we desire nothing more than our children’s happiness and health, and it pains me to think I’m introducing worry into her life. Lily has developed an obsession with hand sanitizer and has become so accustomed to washing up as soon as we get home that she often strips off her clothes at the door. I can sense her growing caution around me, as if she fears I might fall apart at any moment. When one of her grandmothers leans in for a kiss, Lily seriously reminds her, “It’s cold and flu season, Nana.” While I secretly smile at her awareness, I am also heartbroken, feeling the weight of my situation.
Those who know about my condition often ask how I’m doing, and I respond with a cheery “I’m great!” But the truth is, I’m filled with frustration—not just over my predicament but also over the burden it places on my family. I harbor a daily fear of unexpected illnesses, whether from food poisoning or catching something from a shopping cart. The hardest fear to confront is that one day, Lily might resent me for her childhood, feeling that she had to be the world’s youngest nurse while missing out on experiences.
I worry that she might also inherit my condition, which keeps me awake at night.
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Summary
Living with a chronic illness profoundly impacts my life as a mother. While I strive to maintain a positive outlook for my daughter, I grapple with the fear that my condition could negatively affect her childhood. I worry that she is becoming overly cautious and may resent the limitations my health imposes on our family life. Despite these challenges, I aim to provide her with the love and support she deserves while managing my health.