Hi, I am Rishabh Shukla, a 28-year-old living with cystic fibrosis. I am currently based in the UK, and originally from India. It is often said that every person experiences grief in different ways, and grief is not always the same for everyone. Writing this blog about my life with cystic fibrosis and the challenges I faced in terms of health, social, and professional life will be not just about awareness, but also about coming to the final stage of grief, which is acceptance, hoping that from now on things will feel much more free, and maybe even get better.
Over my lifetime, I always thought my relationship with cystic fibrosis was similar to what Peter Parker has with Spiderman (big comic book nerd alert!!!). All my life, I made sure to keep Spiderman (my CF), a secret, and in doing so, I struggled like Peter Parker trying to keep that alter ego hidden. Recently, I realized it is not like Peter Parker and Spiderman, but more like Tony Stark and Iron Man, where everyone knows that Tony Stark is Iron Man, and he is just living his life while dealing with everything that comes with it.
The Chosen One
When I was born, I had frequent infections and pneumonia hospitalisations. For a long time, neither my parents nor doctors could figure out the cause. When I was five years old, a pediatrician, late Dr. K, advised us to get tested for cystic fibrosis. We had to travel to Delhi (10 hours train ride), where we finally found out that I had cystic fibrosis (voila!!).
It is just the beginning (duh duh duh!!)
That diagnosis was just the beginning. It came at a time when there was very limited information about CF online, and most doctors in India were either unsure or unwilling to accept my reports. It left my parents and me even more confused and scared, especially when one doctor said I would be lucky to even cross the age of 18. The only person who truly helped was Dr. K, who made an effort to gather knowledge to guide us even with very few limited resources available.
Even for my parents, understanding CF was a challenge. They researched everything they could and tried their best to help me understand it. This led to a constant search for a “cure.” Many people refused to understand what I had. My parents and I often heard comments suggesting I was not being taken care of properly. Some people would suggest random treatments or tell me to stop eating certain foods. This added a heavy burden, and I ended up being like a guinea pig for different doctors.
But what about me?
For a long time, I just followed whatever doctors told me. I did everything I was asked to do, but it was never enough. I would still end up in the hospital. My mornings were so difficult that I often missed school. Even lung specialists could not do much, not because they did not try, but because there were no proper treatments or equipment available. The more I understood my condition, the more helpless I felt.
People and some doctors constantly judged me and blamed me for not following “their” advice. At one point, I was even forced to stop long lists of food as they assumed it was the reason for my illness.
But honestly, dealing with cystic fibrosis was not just about hospital visits or health scares. The hardest part was dealing with people around me. Since CF is not visible, people often assume the fault is in me. There was constant mocking, body shaming, and dismissal of my struggles. Kids in my neighborhood would say things like, “I would kill myself if I had to live your life,” and sometimes even their parents joined in. It affected me deeply. I became rude and bitter at times just to protect myself.
Throughout my childhood, I was made to feel like I was not worthy of being alive. Even though my teachers, family, and cousins supported me, the anger stayed. I kept asking, “Why me?”
Even when my school tried to accommodate me, my classmates shamed me for it. It felt like having a chronic illness meant you had no right to be happy, or to do the very things that brought even a little bit of joy in the middle of all that chaos.
These experiences pushed me inward, but also toward something meaningful. One day in a library, I found a Spiderman comic. I felt deeply connected to Peter Parker. I made a deal with my mom that for every literature book I read, I could read a comic. So alongside authors like Mark Twain, Charles Dickens, Alexander Dumas, and Leo Tolstoy, I read about Spiderman, Superman, Batman, Tintin, and more. I also relate a lot to Calvin from Calvin and Hobbes (even got them tattooed!!).
One thing stayed consistent in all those stories. No matter what, the characters kept fighting back. That mindset helped me through treatments. I would carry action figures with me to hospitals, and even during surgeries. My doctors would feel even joyed, seeing me play with toys while going through everything.
My pediatrician played a huge role in making me feel safe. He always made sure I was calm and comfortable, and that my parents were too. Now I feel lucky to have that same sense of care and peace with my CF team here at the Royal Brompton Hospital in the UK.
Over time, I developed sinus polyps and had to undergo multiple surgeries. My first surgery was supposed to last two hours, but it went on for five because, as far as I remember, the polyps had spread close to my brain. It was bad that I barely remember anything from grades 7 to 9. That period was rough, filled with constant infections and repeated surgeries.
The comeback
Shortly after moving to the UK, I had a severe flare-up where I coughed up a huge amount of blood and was hospitalized for a month. During that time, I learned that due to a complete lack of specialized CF centers and medical equipment at home, I had been systemically under-treated for 23 years. This lack of medical infrastructure, combined with India’s severe air pollution, caused permanent, irreversible lung damage.
The environment and treatments in the UK helped me prevent the life-threatening lung bleedings and severe infections I faced back home.
In the UK, I finally received proper care through the NHS. My quality of life improved, and I also received vital mental health care. This was the first time I had received proper physical and mental health care. Slowly, things started getting better. I became less bitter and more appreciative of life.
With life-saving CF modulator therapies like Kaftrio, my health improved drastically. Thanks to the treatments, Even with severe lung damage, I can now do things I never thought possible. My infections and hospitalizations reduced significantly. Today, because of this proper care, I feel more optimistic.
However, mentally and socially, the struggles continued. I had hidden my condition for so long that it took a toll on me. Last year, I reached a very dark point, and even considering ending my life. But with support from friends and family, I sought help and began accepting myself and my condition. Recently, I was also diagnosed with ADHD, which explained many things I had ignored (better late than never I guess!!).
Today, I am still a work in progress. I still struggle, but I now have better support and understanding. Sometimes I wonder how life would have been if I had received proper care and kindness earlier. I lost many opportunities because of CF, both directly and indirectly. But I have also rediscovered my love for art, dance, fitness, and swimming, the very reasons I pursued art and design. Moving to the UK was the first time I actually felt healthy enough to live rather than just survive.
It takes a village, doesn’t it?
With this article, not only am I accepting something I have always struggled with, but I also want to thank the people who have always made sure to stand by my side. I do not think I have ever said this to them in person (still working on that in therapy).
Whether it is my mom, who sat through three-hour appointments and even learned to cook eggs, despite her discomfort with them and other non-vegetarian food, just so I could gain weight. Or my dad, who watched all parts of the Rocky series with me in the hospital while sleeping on the most uncomfortable chairs and sofas during that time. My elder sister, who would pick a fight with anyone who bullied me (still does!). My cousins, who were my real friends growing up. My few teachers who took extra time just to teach me. My friends in India and especially ones in London right now, who have been nothing but kind and considerate from the start. The late Dr. K and my physiotherapist Dr. Z, who made best of their efforts while they were operating in a system without any CF resources, and could only watch helplessly as my lungs deteriorated.
Every single person I have encountered in the NHS, from nurses to consultants to physios to therapists, will always have a special place in my heart. Without them, I would not be alive today.
And one of my very special friends, and a fellow quirky, whimsical CFer, Devanshi, who made me realize that things will get better if I am just a little kinder to myself and more accepting of CF.
This also reminds me of a quote by Captain Holt from my favorite series Brooklyn 99. It was said in a different context, but I will paraphrase it here in my own way: ‘Every time someone accepts who they are and says it out loud to the world, it becomes a much more interesting place.’
Opportunity to become a villager
I have had a whole village by my side, helping me through my darkest times. (Right now I am imagining myself as Naruto, in the end…the whole village standing behind him, rooting for him.) And now, I want to take the opportunity to become a villager myself for someone out there as well.
I want to help people who are parents and families of CFers, and those who are CFers themselves. Even though I am not a professional, I will try my best to support in any way I can. I can be reached on LinkedIn, email (rishabh6shukla@gmail.com), or even Instagram. I will do my best to be as helpful as possible.
I hope whoever is reading this feels a little inspired, a little motivated, and maybe even a little more optimistic.
This might have been one of the hardest things I have ever written. So, thank you for reading it this far!
MAY FORCE BE WITH YOU!!!!!
By: Rishabh Shukla