How a child with cystic fibrosis helps me confront health anxiety

Every time my phone rings and shows the hospital prefix number, my heart skips a beat, there’s a lump in my throat, and I feel paralyzed with fear. Do I answer it or let it go to voicemail? My mind races over all the things that the doctor might tell me. Is it good or bad news?

For as long as I can remember, this response has been my normal while waiting on medical results. Even though health anxiety is nothing new to me, anxiety about the health of my child, who has cystic fibrosis, is a whole different sensation.

My own journey with health anxiety

When I was in college, I worked at a tanning salon, which I thought was the best job because I could tan before and after my shift. During my sophomore year, though, I noticed a weird mole on my stomach. My dermatologist told me it needed a biopsy, which came back as severe atypia — a possibly precancerous mole that could become melanoma. That was enough to scare me into never tanning again; further, it was the catalyst to my journey with health anxiety.

In the years that followed, I had many bouts of thinking I had serious health issues. I hate the word hypochondriac because it has negative connotations, yet it’s a term often associated with people like me, who find themselves perseverating on symptoms that could be the sign of something bigger.

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I was more interested in researching my symptoms and trying to find a potential answer. I wanted to solve the mystery of what ailed me, but often it fueled in me an anxious state.

I worried about my health constantly through my 20s, but in my 30s, I met my husband and felt more at ease, or at least distracted. But then I got pregnant with our second kid, and we learned she could have a life-threatening disease. Anxiety again took center stage. During that time, I couldn’t believe the universe would send someone with my anxiety levels a child with complex medical needs.

A new era of health anxiety

My pregnancy was awful for my mental health; I’d go so far as to say it was the darkest period of my life. However, I channeled the energy I once had when researching my own ailments into researching cystic fibrosis. Having knowledge and information, I felt, was crucial to address my anxiety. But it’s a fine line between feeling informed and prepared and being overwhelmed and anxious.

I know I’m not at ease when I don’t understand doctors’ answers or have lingering questions when it comes to the health of my daughter, Claire. But I’ve learned to be more comfortable with trusting medical professionals, even in situations that provoke my anxiety.

Unfortunately, I’m in those situations often. Parenting a child living with cystic fibrosis is a roller coaster ride of highs, lows, and many scary unknowns. I’ve had to learn to adapt and find my way through the stressful times.

Shockingly, having these uncertain medical experiences has helped my health anxiety, in a way. I know more about being around doctors and advocating for an appropriate care plan. I know where and how to research and to ask questions to help me feel more informed. It feels something like immersion therapy.

I still experience a ton of anxiety while waiting on Claire’s test results. Yet I feel better equipped to handle the uncertainty and outcomes now. I’ve also gained strength and become more brave for her in medical situations because I have no other choice.

In the early days, I often questioned why the universe gave a child with cystic fibrosis to someone with anxiety about her own health. But today I often remind myself of something a dear friend told me right after Claire was diagnosed. She said that of all our friends, I was the one most poised for this role. I was the one who could do it.

I didn’t think she was right at the time. But now I know that even though I personally struggle with health anxiety, I’m the right person for this job with my daughter.

Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.