The psychological impact of chronic illness on the individual and the family

A columnist has a tough conversation with her 9-year-old son

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by Shalana Jordan |

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banner image for Shalana Jordan's column Walking on Water, which features a woman on the left walking on a greenish body of water.

“Sometimes I worry about what life would be like if you died.”

Upon hearing this, I felt a pang of pain in my heart and a knot in my stomach. I looked in the rearview mirror at my 9-year-old son sitting behind me. He was staring out the window deep in thought as we drove home from school.

“What do you mean?” I asked, unsure of where the sudden dark turn in the conversation had come from.

“I don’t know. You’re just so sick. You’ve been doing chemo for so long and you’re not getting better,” he replied. “I just wonder what will happen to us if you die.”

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My heart broke and tears filled my eyes. My sweet child was stressed and worried about me. Sadness, guilt, worry, and shock washed over me. I paused to choose my words carefully.

“Well, I don’t plan on going anywhere anytime soon,” I said. “Hopefully, I won’t die until you’re much older. And by then, you’ll have a wife or a husband, your brother, your friends, and maybe even children of your own to help you through my passing. Death is sad and scary, but unfortunately, it’s a normal part of life.”

He made eye contact with me in the mirror and smiled halfheartedly. A simple car ride home had turned into an existential crisis. Why doesn’t anyone warn us how hard parenting is?

Unimaginable loss, and something positive

Atypical hemolytic uremic syndrome, which I nearly died from in 2020, has already taken so much from me. It caused hemolytic anemia, multiorgan failure, and a two-month stay in the intensive care unit. Additionally, I have several complicated and rare comorbidities, and I’ll need chemotherapy for the rest of my life.

I also lost my career, my physical strength, my home, my car, months of time with my children, my ability to have more children, and so much more. Plus, I must take tons of medication every day, and I have chronic pain, fatigue, and post-traumatic stress disorder.

But I never anticipated how much it would affect my children’s mental health. When all of this began four years ago, they were only 4 and 5 years old. They don’t remember much about the beginning of my illness or being stuck at their grandmother’s house for five months while I was hospitalized and on dialysis.

However, as they get older, they understand more about my illness and its daily symptoms. I try to hide as much as I can on the harder days, but they’re becoming very observant. My illness makes them worry about me, which I never wanted for them.

The positive takeaway is that my boys are learning sympathy and how to care for others. They are two sweet, not-so-little boys who love their mom and hate to see her suffer. Hopefully, all of this will help them to grow into men who are kind, understanding, and patient with anyone in their lives who needs it.

Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to aHUS.


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