Complexities of Disease Management and Single Parenting

My daughter Tina (name changed) is a sensitive and caring child. Our home used to be filled with her ring of spontaneous laughter every time she was in a playful mood. Sadly, the whirlwind of enthusiasm came to a screeching halt after her father passed away. At the tender age of 4, she was too young to understand the concept of irreversibility but instinctively she knew that something sad had taken place. One day when I was sitting in my chair, perhaps sporting a morse look, my daughter crawled over to my lap and said, “Don’t worry ma. I am there.” Looking at her innocent expression, I gave her a broad smile. She was recapitulating the same phrase that I had said to her when she used to be afraid of the dark.

As days passed, I was constantly trying to put together a system that could fill the void for her after my husband had departed. Sadly, the pressure of being a single parent only escalated after my daughter had got diagnosed with HS. It had become increasingly difficult to witness the ordeals she continued to face while dealing with Hidradenitis Suppurativa. All I could offer were a few material comforts and caring words to brighten an otherwise crummy day. But I couldn’t take away her pain.

Complexities of hidradenitis suppurativa

As HS is a progressive disease, it constantly kept throwing up insurmountable challenges at us. Painful sores affected her sleep quality. The red lumps in her armpits would itch leaving her skin dry and flaky. Draining abscesses would not only stain her clothes but also leave an unpleasant odor; so much so that she had begun to socially isolate herself. This chronic condition that blocks hair follicles for unknown reasons had become a living entity in our lives and it took us quite a while to come to terms with this reality.

A close encounter with death

After she underwent her first surgery in the US, my role in her life had become minimal. I was happy to see her evolve into a sober and thoughtfully reflective person. But it wasn’t long before we found ourselves groping in the dark yet again. We consulted a dermatologist in our city for this recurring condition. It had surfaced soon after she had returned. Tunnels or sinus tracts develop underneath the skin and can spread to various sites of the body causing outbreaks and scarring. This got us worried as the tracts had previously progressed into the passage of the rectum that had caused pain and bleeding.

After having seen the ultrasound scan report, the dermatologist was certain that another surgery was soon due. A plastic surgeon from a well-known hospital in our city had performed the surgery and the wounds had healed well over time. But HS seldom allowed us to live in peace. Not even a year would go by without a visit to the doctor. Yet again, for the third consecutive time, we went back to the same surgeon for another round of dealing with acute pain, anesthesia and antibiotics. But this time, the surgeon decided to go a little deeper into the tissues. That is when the major mishap occurred.

Check out Part 2 of this series!