My Journey with Cystic Fibrosis: Overcoming Obstacles and Embracing Self-Care – by Zain Arif
Hello there! I’m Zain Arif, a 19-year-old who’s been living with Cystic Fibrosis (CF) since I was just a baby. Being diagnosed with CF wasn’t easy, especially in a country where the disease wasn’t commonly known. But thanks to a determined doctor who recognized the symptoms, I was able to start receiving the proper treatment for my condition.
Moving Abroad, Facing Obstacles
Growing up, I was constantly on the move due to my father’s job. While traveling to different countries as a child was exciting, it also came with its own set of challenges. As a fussy eater and someone who struggled with their health, it wasn’t always easy for my parents or me. But we persevered, and eventually, we settled in South Africa, where I was finally able to get the help I needed at a CF center.
Refusing to Give Up
Despite having a stable home, my health was still a challenge. I had to take a lot of breaks, and days off due to my infections, breathing issues, and dietary restrictions. But my studies were my passion, and I refused to let my health hold me back. I also enjoyed creating art as a hobby.
Complications and Care
During high school, I faced another obstacle: dental issues. My lower jaw was in front of my upper jaw, and I had many irregular teeth growing, making it challenging to eat. It took me an average of 1.5 to 2 hours to complete a meal, and I had to consume three large meals a day to get the required nutrition. I underwent several treatments, including removing milk teeth and realigning my jaw with rubber bands and braces. It was a painful process, but it was worth it in the end. I could eat faster, and my weight increased, albeit at a slow pace.
Homesick and Restricted
Unfortunately, being a CF patient, it wasn’t easy for me to visit my home country, Pakistan. The environment wasn’t suitable for me, and I often fell ill whenever I visited. I haven’t visited my home country since the COVID pandemic began, and my condition worsened. Despite this, I encouraged my parents to visit our family and learned to take care of myself while they were away.
Fighting for Breath
At age 16, I faced another challenge: two pneumothoraxes. The first one was severe, and doctors placed a tube in my left chest region to remove the air. The second one was less severe but still required oxygen and observation. Despite these setbacks, I was determined to succeed academically and was fortunate enough to have my exams online during the COVID pandemic. I got all As in my seven subjects for IGCSE, even though I had issues breathing during my final exams.
Health Crisis in School
Just before my final A-level examinations at age 18, I had another pneumothorax. It wasn’t as severe as the first one, but it still required a chest tube. I had the tube for 1.5 weeks, and now I have a scar under my left armpit. My morale was low during this time, but I refused to let it defeat me. Despite my low expectations, I was able to pass my exams, though not with flying colors.
Chasing Ambitions Abroad
When it came time for me to attend university, I moved to Sweden, where my father had also been promoted to a job that had better facilities for treating Cystic Fibrosis. Although I didn’t have the grades to pursue my desired field, I applied to Lund University for the Swedish for Immigrant Bachelor’s Programme. I wanted to learn the language so that I could communicate and socialize with others and get back into sports, particularly football, and badminton.
Achieving Goals Against Odds
Despite being excited about this new opportunity, I faced another obstacle. My breathing became difficult, and I was constantly fatigued. I went to the hospital, and the doctors discovered I had permanent bronchial damage from pneumothorax and an infection. I had to learn to administer my own IV treatment independently since that’s how things work in Sweden. I also needed to use an oxygen machine, even when I was at home, and sleeping was a challenge.
Hope in a Pill
Although my health was a setback, I refused to give up on my dreams. I asked my doctor to inform the university of my situation and postponed my program for the next year. Meanwhile, we started talking about lung transplant possibilities. However, we arrived in Sweden at the perfect time because Trikafta, a medicine that targets the CF gene, was being negotiated to come to Sweden. My doctor requested the drug for me, and I took it for three weeks. I could feel my breathing improve and have more energy than I had in a long time. I was even gaining weight at a faster rate than before.
Support in Tough Times
While the medicine was a lifesaver, it couldn’t prevent infections from taking hold. I got them once a month, and I had to undergo extensive IV treatment for ten days each time. I eventually got COVID-19, which was my fourth or fifth time getting it (I lost count). I had to be quarantined and admitted to the hospital for a ten-day IV course for both COVID-19 and the infection.
Nurturing Physical and Mental Health
Despite all these challenges, I didn’t let them stop me from pursuing my dreams. I started taking online courses in computer science and even began doing some freelance writing, data entry, and coding. I am focused on becoming a Full-Stack Developer or Machine Learning Software Engineer, and I’m hopeful that my skills will lead me to a successful career.
Living Life to the Fullest
My faith also helped me get through these tough times. I started praying regularly and found solace in the month of Ramadan, which unfortunately coincided with the time I needed to take Trikafta. However, I remained steadfast in my beliefs and refused to let my condition limit my spiritual growth.
Despite all the challenges, I am still here, living, walking, exploring a bit of Sweden, and pursuing my dreams. I have made good friends and keep in touch with them regularly. They have been a source of strength and support during my toughest moments.
Throughout my journey with CF, self-care has been crucial. Taking care of my physical and mental health has allowed me to overcome obstacles and achieve my goals. Some of the self-care practices that have worked for me include practicing yoga, meditation, journaling, and creating art. I’ve also learned to take breaks when I need them and not push myself too hard.
Living with CF has been a challenging experience, but I’ve learned to embrace the obstacles and live life to the fullest. I hope that sharing my story inspires others to do the same. Remember, self-care is essential for everyone, especially those who are dealing with health issues. Taking care of yourself physically and mentally is the key to overcoming obstacles and achieving your goals. Don’t be afraid to seek help when you need it, whether it’s from medical professionals or loved ones. And never give up on your dreams, no matter how difficult the road may seem. With perseverance, determination, and self-care, you can overcome anything that life throws your way. Thank you for reading my story, and I hope it has encouraged you to prioritize your own self-care journey.
Zain’s Instagram: @apricitymeraki