How CF Has Impacted My Mental Health

A lot has changed in my life after being diagnosed with cystic fibrosis. I remember when I was 10 years old and coughing up blood for the first time – it almost took the soul out of my body. I was so scared that I didn’t tell my parents for a while. After I told them, they were equally frightened. 

My medical journey has been a roller coaster. Coming from a country where newborn screening and genetic testing are not available – only in a few selected hospitals – no one ever suspected I might have CF. I had frequent pneumonia growing up, and my symptoms started when I was 9. My parents took me to a pediatrician, and I was diagnosed with asthma. Later, I was misdiagnosed with tuberculosis and was put on medications, which further negatively affected my lungs. Finally, I was taken to an allergy specialist and pulmonologist in another city, where I was diagnosed with allergic bronchopulmonary aspergillosis (ABPA). I used to have frequent lung infections as any other CF kid, and no matter how much I tried, I couldn’t gain enough weight and was constantly bullied. I was put on steroids, and my condition became a bit better. 

Now if you ask me, a 9– or 10– year–old kid having to go through all this cannot feel in her best mental state. I lived in constant fear; I didn’t even think I would make it to 21. I was, therefore, diagnosed with major depressive disorder (MDD) and had to undergo some intense mental health treatments like repetitive transcranial magnetic stimulation (rTMS). In 2020, during the pandemic, I was hospitalized for 18 days, where I went under electroconvulsive therapy (ECT) as I got extensively self–destructive and suicidal.

Finally, I came to the United States for college to study biology at the University of California, San Diego. There, at the UCSD health center adult CF clinic, I was diagnosed with cystic fibrosis. I came to the U.S. to have a bright future, study biology, and go into respiratory care, but maybe also to seek better health treatment. When I went to the adult CF clinic, I just said one thing to the doctor, “Manage my physical health, and my mental health will follow.”

While in the U.S., I was admitted as an inpatient at a psychiatric facility for 5–10 days, where I was transferred to the general medicine ward as I was coughing up blood. I took both a sweat chloride test and a genetic test, and finally, the results were revealed. I had two rare cystic fibrosis mutations, and my sweat chloride test was in the 50s. I broke down as all I knew about cystic fibrosis was that it was a deadly and progressive disease. I became suicidal again until the clinic team educated me about CF and told me about the advanced treatments and therapies that are now available and make CF a manageable and livable condition.

In February 2022, my doctor started me on Kalydeco (ivacaftor), after which my life completely changed. It’s like a miracle happened, and everything was alright for once in my life. My doctors consider my life expectancy up to 80 years of age. I am currently at 70–73% of lung function and stable. It’s been more than a year since I started Kalydeco, and I haven’t had a single hospitalization for respiratory issues. My mental health is now supposed to be OK, but the scars remain. The trauma of seeing all that blood coming out of my tiny mouth and dealing with that fear of not knowing what is wrong with my body will forever remain with me. I often relapse mentally and recently had my third and fourth suicide attempts in 2023. However, I am dealing with it, working on myself, and trying my best to stay healthy and happy.

Whenever I feel that my body is unfit and unhealthy and what is the point in even trying when giving up is so easy, I remind myself how far I have come and can go.

There are so many people who have lost their lives to CF or are losing it gradually – not getting the proper treatment, not achieving the dreams they had or wonders they could have done. They just never got the chance to prove themselves and live their lives. But you, you have it. You can do so much more than you think.

 

Remember, if you don’t feel like living for yourself, there’s always someone else you can live for. 

In February 2023, I started an organization on the UCSD campus called Purple Breath to raise awareness for cystic fibrosis and raise funds for an organization in North Carolina called the Live Fearlessly Foundation (LFF), which provides activity grants to people living with CF. I also was recently appointed as a board member for LFF. Being a student, I cannot donate large amounts of money for CF research. Therefore, I contribute my time by volunteering at every CF Foundation event I get a chance to and giving my best to help make the event successful. 

I am incredibly thankful to my family and friends for being a constant support in my journey and always being there for me through thick and thin. I still struggle mentally. However, it doesn’t stop me from who I want to be. And remember, for all CFers: we are on a different journey than most people around us. Therefore, never compare yourself to people who are on a different journey than you.

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