If someone were to describe my life, I believe they would say I’m a devoted mother. They might highlight my creativity and the effort I invest in everything I undertake. However, it’s unlikely anyone would label me as being unwell. When people see me, they don’t notice my health struggles. The only hint might be the medical ID bracelet discreetly tucked under my watch or the curious glances towards my phone when an alarm signals it’s time for medication. To the outside world, I seem perfectly fine.
Let me clarify: I’m not entirely ill or disabled, but I do live with a chronic condition that shapes my existence. I have hypopituitarism, a diagnosis that emerged after a surgery to remove a tumor from my pituitary gland. Sadly, the gland couldn’t be preserved, and now I rely on a regiment of costly medications to substitute for the cortisol and hormones my body fails to produce.
You might wonder what the fuss is about. Essentially, without this small but crucial gland, which is often referred to as the “master gland,” my body struggles to function autonomously. I take medication to stimulate my thyroid, additional pills to manage the onset of early menopause, others for kidney regulation, and most importantly, a pill to replace lost cortisol. This last medication complicates matters: normally, cortisol is produced when the body experiences stress, fear, or illness. If I fall ill, my husband must administer a shot of dexamethasone to prevent me from slipping into a coma. Yes, I must carry these shots with me everywhere.
The most heartbreaking aspect of this situation is how acutely aware my daughter is of my chronic illness. At just 3 years old, we had to teach her how to contact her father in case I lost consciousness while he was away. Now at 5, she remains vigilant. If she notices me resting with my eyes closed, she immediately asks, “Mommy, are you alright? Should I call Daddy?” It tears at my heartstrings.
When I became a mother, I never envisioned a scenario where my child would need to take care of me, especially at the young age of 38. Even more painful is my inability to care for her when she is unwell. I can manage minor ailments like a cold, but when it comes to strep throat, pink eye, or any other serious illness, I must maintain my distance to avoid a hospital visit. The agony of not being able to support my child when she needs me most is truly devastating.
My condition extends beyond our home life; it has also disrupted our social activities. We have skipped birthday parties, church events, and outings simply because we fear exposure to illness. Recently, we had to keep our daughter home from school after another child vomited in class. She cried for most of the morning, longing to be with her friends. We even had to cancel a family vacation due to concerns about infectious mosquitoes, which broke her heart yet again.
As mothers, we never want to be the cause of our child’s sadness. We desire nothing more than to see our children thrive and be free from our burdens. Unfortunately, I feel that I am inadvertently passing my anxieties onto her. She’s developed an obsession with hand sanitizer and has formed a habit of showering immediately after returning home from school. Every day, I notice her becoming increasingly cautious, as if she fears I might break. When one of her grandmothers tries to kiss her, she solemnly warns, “It’s cold and flu season, Nana.” While I secretly find this amusing, I know I need to rein in my own worries, which only adds to my distress.
People who are aware of my condition frequently ask how I’m doing, and I respond with a cheerful “I’m great.” The reality, however, is that I’m incredibly frustrated—not only am I coping with my health challenges, but I’m equally upset that my family, especially my daughter, is navigating this journey alongside me. Each day, I live with a hidden anxiety that I might contract food poisoning, or that someone before me in the grocery store had norovirus, or worse, that my daughter will one day resent me.
This persistent fear—that she might one day reflect on her childhood and feel I stifled it by making her assume a caregiver role—keeps me awake at night. I also worry that she might inherit my condition.
In conclusion, navigating motherhood while managing a chronic illness is fraught with challenges that impact both me and my daughter. The desire to protect her from my struggles is always at the forefront of my mind, but I often find myself failing to shield her from the consequences of my health issues.
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