If you were to ask someone to describe me, they would likely say I’m a devoted mom. They’d point out my creativity and mention the effort I pour into everything. However, I doubt anyone would mention my health challenges, as they are often invisible. The only hints might be my discreet medical ID bracelet tucked beneath my watch or the moments when an alarm on my phone reminds me to take my medication. Most people wouldn’t suspect that there’s anything off at all.
To clarify, I’m not seriously ill nor disabled, but I do manage a chronic condition that is now an integral part of my life. I’m hypopituitary, a situation that arose after a surgery a few years ago to remove a tumor from my pituitary gland. Unfortunately, the gland was permanently damaged, meaning I must rely on a combination of costly medications to replace the cortisol and hormones my body can no longer produce.
You might wonder why this is such a big deal. Essentially, without this small but crucial gland—often referred to as the master gland—my body struggles to function normally. I take one pill to support my thyroid, another to delay early menopause, two more for kidney regulation, and most importantly, a medication to replace my lost cortisol. This last one complicates matters significantly. When faced with stress, fear, or illness, a healthy body produces cortisol. For me, if I get sick, my husband must administer a shot of dexamethasone to prevent a possible coma. And yes, I carry those shots with me wherever I go.
The hardest part is how my condition affects my daughter. At just three years old, we had to teach her how to call her dad if I ever passed out while he was away. Now at five, her concern hasn’t eased. If she sees me resting with my eyes closed, she instantly goes into worry mode: “Mommy, are you OK? Should I call Daddy?” It tears me apart.
When I gave birth to her, I never imagined she would have to worry about me, especially at such a young age. It’s even more painful that I can’t care for her when she’s unwell. A simple cold is manageable, but anything more serious like strep throat or a stomach bug means I have to keep my distance to avoid a hospital visit. The agony of not being able to comfort her when she needs me most is a heart-wrenching experience.
Our lives are also impacted outside the home. We’ve had to skip birthday parties, church events, and outings with friends because we’ve learned that someone may be sick. Recently, we had to keep her home from school after a classmate was ill, causing her to cry because she missed her friends. We even canceled a planned vacation due to concerns about infectious mosquitoes, breaking her heart once more.
As a mother, it’s never easy to see your child’s heart break. All we desire is for our kids to find joy and health, and the last thing we wish is to impose our struggles on them. Unfortunately, that’s precisely what’s happening. She has developed an obsession with hand sanitizer and has turned into a little germaphobe, often stripping off her clothes to shower the moment we walk in the door after school. I see her becoming increasingly cautious around me, as if she’s afraid I might fall apart. When her grandmother leans in for a kiss, she warns, “It’s cold and flu season, Nana.” I can’t help but smile at her concern, but then I feel a wave of devastation wash over me, knowing I need to curb this anxiety.
Those who are aware of my condition frequently ask how I’m doing, and I always reply that I’m fine. But the truth is, I’m furious—not just because I have to navigate this difficult situation, but because my family, especially my daughter, is affected too. Every day, I live in fear of getting food poisoning or catching something from the shopping cart. I also worry about the possibility that my daughter might resent me for what she has had to endure.
This fear—that one day she’ll look back and say I ruined her childhood by making her act like a caregiver at such a young age—keeps me awake at night. Additionally, I dread the thought that she might inherit my condition one day.
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Summary:
Living with a chronic health condition can profoundly impact family life, especially for a parent. The author shares her journey with hypopituitarism, detailing the challenges of caring for her daughter while managing her health. The emotional toll of being unable to fully participate in her daughter’s life and the fear of the condition affecting her child creates a constant struggle. Despite outward appearances, the author grapples with feelings of guilt and anxiety about how her illness shapes her daughter’s experiences.