Joe found a nurturing environment interning for International Magazine Centre, where he regained his confidence in finding employment as someone living with cystinosis.
Navigating your way through your teenage years into adulthood is difficult enough for most, but when you factor a rare disease into the equation, it’s a totally different challenge to overcome.
Living with cystinosis from 14 months old, I have always struggled to cope with milestones. Like my experiences jumping from paediatrics to adult care, transition periods have, and always will be particularly hard for me. Because of my health problems, I have been relying on my parents, and when confronted with challenges to face alone, I’d crumble.
So, when my third and final year of college was over, I was totally in the dark about where to go or what to do next. I had considered going to university, after all, it was the norm of society at the time, however, I had not long had my first kidney transplant and I was concerned that the vast number of appointments would be a hindrance to my progress. With limited help from career advisors, and for the first time ever, the next steps were my own making.
The years that followed led to a variety of different situations—from voluntary charity roles to temporary marketing positions, and eventually to jobs more suited to my experience. However, not one of them understood my condition, or me.
I never felt any discrimination, just a lack of understanding from my colleagues and management that I would sometimes experience fatigue and brain fog, or even just need time off for hospital appointments. In the time between work, I found myself in a deep depression, and my self-worth was at an all-time low.
These issues improved when I found more permanent work at a local pub. The staff were great, and I made some close friends along the way, but it just wasn’t the work I was passionate about. It appeared as if my hard work and perseverance to pass my exams, at both school and college, were wasted time. After three years working there, I wondered if I would ever find more meaningful employment.
I applied for many different jobs but never managed to progress past the interview stage. One day, I came across an internship with the International Magazine Centre, advertised through RARE Youth Revolution’s Internship Programme. I had never considered internships before, but as it was remote working and in the creative industry, I applied immediately.
Soon after, Chelsea, RARE Youth Revolution’s Youth Coordinator, emailed me frequently to keep me up to date with the progress of my application, and shortly after an interview, I heard the words I had been waiting so long to hear—"you’ve got the job!” I couldn’t quite believe it. This was the breakthrough, and the hope that I needed. I couldn’t wait to start!
From the very first day, Nikki Simpson, the founder of the International Magazine Centre, was amazing. She always considered how I could work around the limitations of my rare disease and what each working day would look like, and most importantly, was more than understanding when I needed to take time off for hospital appointments.
Throughout my time with Nikki, I gained more knowledge than I had ever expected. I learned about the inner workings of the publishing industry, and how to gain interpersonal skills by joining Zoom meetings with her clients and then connecting with them on LinkedIn. I was also able to further develop my social media, content and writing skills. Thanks to the home working focus, there were no long commuting hours to and from the office each day, which was a real help as I suffer from fatigue.
The whole internship was such a worthwhile experience, and I’m grateful to RARE Youth Revolution and the International Magazine Centre for allowing me to become a small part of Nikki’s work to help small publishers reach their full potential.
After my internship, when what I had achieved had sunk in, I applied to a listing for a content and editorial assistant role with the RARE Revolution team. Thankfully, with Nikki’s feedback and the skills I developed from my time with her, again, I got the job!
Everything seemed to come together at once, and I am still very grateful to Nikki at the International Magazine Centre and RARE Youth Revolution for giving a rare disease survivor the chance he waited so long for.
Socials
Instagram @joescystinosisstory