When others describe my life, they often characterize me as a dedicated mother. They highlight my creativity and my relentless work ethic. Rarely, if ever, would someone refer to me as “sick,” because my condition is not immediately visible. The only hint might be my discreet medical ID bracelet, concealed beneath my watch, or perhaps they might notice the alarm on my phone signaling a medication time. To the casual observer, I appear perfectly healthy.
To clarify, I am not severely ill nor disabled; however, I do manage a chronic condition that will always be a part of my identity. I am hypopituitary, a diagnosis that arose following surgery to remove a tumor from my pituitary gland. Regrettably, my gland could not be preserved, and I now rely on a combination of costly medications to replace the cortisol and hormones that my body no longer produces.
You may wonder, what’s the issue? Essentially, without this small gland, often referred to as the master gland, my body cannot function independently. I take medication to support my thyroid, another to delay premature menopause, and two more to help regulate my kidney function. Most critically, I take a medication to substitute for the cortisol my body lacks. This last medication complicates matters. Under normal circumstances, cortisol is produced when an individual is stressed, ill, or frightened. In my case, if I become unwell, my husband must administer a dexamethasone injection to prevent me from slipping into a coma. Yes, I carry these injections with me at all times.
The most challenging aspect is that my daughter is acutely aware of my health issues. When she was just three, we taught her how to contact her father on my phone in case I lost consciousness. Now, at five, the situation hasn’t improved. If she sees me resting or closing my eyes, she immediately goes into alert mode: “Mommy, are you OK? Should I call Daddy?” It’s heartbreaking.
When I became a mother, I never envisioned a scenario where my daughter would need to care for me, especially at my young age of 38. Compounding this emotional burden is my inability to care for her when she falls ill. I can manage minor ailments like a cold, but anything more serious—strep throat, pink eye, or a stomach virus—forces me to maintain my distance for my own safety. Not being able to tend to my child during her times of need is one of the most heartrending experiences I’ve had.
This condition impacts our lives beyond the home. We have missed birthday celebrations, church gatherings, social outings, and vacations simply because we hear of others being sick, and we cannot afford the risk. Recently, we had to keep our daughter home from school because a classmate had vomited on the reading rug. She cried because she wanted to be with her friends. To make matters worse, we had to cancel a planned vacation due to concerns over infectious mosquitoes, further breaking her spirit.
As mothers, our primary desire is to see our children happy and healthy, and we never want to burden them with our struggles. Unfortunately, my situation has led to just that. My daughter has developed an obsession with hand sanitizer and has become accustomed to showering immediately upon returning home from school. Each day, I notice her becoming increasingly cautious around me, as if she fears I might break. When one of her grandmothers leans in for a kiss, she seriously reminds her, “It’s cold and flu season, Grandma.” While I secretly find it amusing, I also feel a wave of devastation wash over me.
Those who are aware of my condition frequently inquire about my wellbeing, to which I invariably respond that I’m doing great. The truth is, I harbor deep resentment—not only for enduring this challenging journey, but especially for the toll it takes on my family, particularly my daughter. Each day, I grapple with a hidden fear of foodborne illnesses or catching something from a shopping cart. Even worse, I dread the thought that my daughter might one day resent me for her childhood being overshadowed by my health challenges.
This fear that she could look back and blame me for her upbringing, or worse, that she might develop the same condition, keeps me awake at night.
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Summary:
Managing a chronic illness while raising a young child presents numerous challenges, especially when the child becomes aware of the parent’s condition. The author, living with hypopituitarism, expresses her concerns about how her health struggles may impact her daughter’s happiness and childhood experiences. She grapples with the frustration of not being able to care for her child during illness and the emotional toll it takes on their family life.