It's Not Easy to Confront the Emotional Toll of Living with CF

Some days, the biggest struggle I have is accepting that I have CF.

March 8, 2016 | 4 min read
Dorothee Marx

Having been diagnosed at birth, I've lived with cystic fibrosis all my life. Still, the older I get, the more I struggle with accepting the disease. You would think that, at almost 30 years old, I would have gotten used to it. It should be normal, perhaps even easy. It's not. I take my medications, I do my nebulizers, I go to my care center appointments and I know when to take a break. In terms of managing my treatment plan, I'm a model patient. I know how to deal with the demands of my body -- yet I don't know how to deal with the emotional strain.

I was first diagnosed with depression in 2011. Six months of antidepressants helped me to feel better. In 2012, the depression came back, an anxiety disorder in tow, and the two of them knocked me flat on my back.

I turned into a hypochondriac. My ribs hurt? Embolism! My head hurt? Brain tumor! It got so bad that I couldn't be alone. Three months of in-hospital therapy helped me understand that I was not afraid of getting cancer. In reality, I was so afraid of CF that I couldn't face being afraid of the disease itself.

My boyfriend Benjamin always visits me in the hospital.

Today, I can admit that I'm afraid of what CF has in store for me. The last two years have been incredibly difficult. Physically, my CF had always been manageable. But that changed. I cultured positive for B. cepacia (Burkholderia cepacia). I got pneumonia, was hospitalized for DIOS (distal intestinal obstructive syndrome), my PFTs dropped and I was diagnosed with pre-diabetes. Each new diagnosis sent me into a black hole of despair for days or weeks.

I have begun to express my anger, sadness, fear and grief about what is happening. Yet, some people only see CF as a physical disease. CF is a disease that takes an emotional toll. I want to tell them that I'm not just a disease that is being treated. I'm a flawed, emotional human being who struggles with her disease.

My therapist tells me to accept that I have CF and not fight reality. But, acceptance feels like giving up. I don't want to spend so much time down in that dark hole, but how can it be okay that the CF is trying to take over my life? How can I stop worrying that the next infection will be "it" -- that one illness I don't recover from? I want so much in life, and CF keeps taking my time away. How can I accept that? I hope I can answer that question someday. Today, I cannot.

Standing at the top of Arthur's Seat in Edinburgh, having fought my way up the hill. (I guess it's always an uphill journey with CF.)

I've always received all the support possible from my family and friends, and couldn't feel more loved. CF has an emotional side and I need their help to face my fears and sadness. Even though they are more than 300 miles from my home in Kiel, Germany, my parents are always there for me. My boyfriend, a paramedic, takes care of me when I'm sick, calms me down and changes my IV catheter when I'm on antibiotics.

Admitting my struggles with depression and anxiety to my friends has usually deepened our friendships. Whenever I've talked openly about my struggles with my disease, I've received support, empathy and, sometimes, admissions that they too have mental health issues. They have helped me through so many struggles and I'm sure that with their continued support, I will learn to accept my CF more easily.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Born in Germany, Dorothee was diagnosed with cystic fibrosis at birth. She has always tried not to let her CF stop her from enjoying life. She loves traveling and learning new languages. After graduating high school, she completed a volunteer service in a parish in Stockholm. She lives near the Baltic Sea with her husband and works as a junior lecturer in American literature at Kiel University. She is pursuing her PhD with a dissertation on representations of time and disability in contemporary American literature. She tweets about life with CF on Twitter.

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