Untangling the effects of chronic illness on mental health
I hope awareness leads to more people seeking the help that they deserve
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As a therapist who lives with cystic fibrosis (CF) and a double-lung transplant, I’m not immune to mental health struggles, and in my experience, it’s nearly impossible to talk about chronic illness without talking about mental health.
For many years, I felt alone and separated from my peers, but I hid my depression well, smiling through it all while nobody asked deeper questions. But I carried a heaviness I didn’t know what to do with as I tried to balance ideas about how to live my life with the fear that I had a very short life expectancy. Being reminded that I might die young damaged my ability to live in the present and dream for the future. I felt like a ticking time bomb.
Still, I went to college, earned two degrees, and worked a full-time job. But I also had a secret life that nobody knew about, filled with breathing treatments, medications, and doctor appointments. It was like having a second full-time job, something I think able-bodied people may not be able to relate to. I had to be in the hospital for long periods of time for intensive therapies and depended on supplemental oxygen. I didn’t feel well most of the time and often opted to stay home. Living alone added to the loneliness, but it was the healthiest place for me, so I didn’t have a choice.
Feeling safe in my body
It’s taken years to untangle all of that, but even still, the fear creeps in when I make long-term plans. I still struggle with feeling safe in my body, always on high alert that something is wrong when I feel the slightest twinge or sharp pain. I hate that the emphasis on life expectancy remains a part of the conversation about CF and transplant. It’s done more harm and no good.
Medical trauma is real. Past traumatic experiences through surgeries, medical tests, or doctor appointments create a physiological response to those experiences. The anxiety complicates being able to engage in life normally because my nervous system feels like it’s constantly under attack.
Learning not to sugarcoat how my rare disease has affected my mental health has been good for me. In the past, I watered down my experience to alleviate other people’s discomfort, but it came at the expense of my own well-being. Navigating these challenges alone was so isolating, and I’ve learned that the first step to healing is talking about it.
As we observe World Mental Health Day on Oct. 10, I hope the conversation about chronic illness and mental health continues in both communities. In sharing my experience, I hope awareness leads to more people seeking the help that they deserve, and I’m encouraged that when I talk about the connection between chronic conditions and mental health it’s made others feel less alone.
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.
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