Prioritise the things you love
My name is Rhiannon White, I am 22 years old, and I live in Adelaide, South Australia.
For 21 years of my life, I had no idea what Crohn’s disease was. After nearly a year of unexplained symptoms, many different tests (bloods, MRI, X-rays, ultrasounds), and being repeatedly told “there’s nothing wrong with you”, I was diagnosed with Crohn’s disease in November of 2021. Earlier, in that same year, I was also diagnosed with PCOS (polycystic ovary syndrome), so I can’t say 2021 was my favourite year.
Having lived quite a happy, healthy, active, and busy life prior to this, it came as quite a shock to myself and those around me that this was my new reality. I was happy to finally have an answer to why I felt so crap all the time but being diagnosed with one incurable chronic illness – let alone two within the space of six months, was a bit too much for me to handle. I was super harsh on myself and my body at the time, as I gained quite a lot of weight. However, I quickly learnt that life is about more than how you look, or what you weigh. I can only describe my journey as one day I was healthy, and the next it seemed like someone had flicked a switch and I was not. It affected my studies, my work, and my everyday life.
When I first started noticing changes in my health, I made a private Instagram page (@rhirhisprogress) for myself, my partner, and coach to keep me accountable and document my progress. After opening up to more people, I realised that I was also helping other individuals become more confident in what makes them unique, or just reach out if they need support. This made me want to share more with others, so I turned my account public to share my updates with anyone who wishes to see it. I also wanted to make sure that no one going through the same or similar experiences to me, ever felt as ashamed or as alone as I did. These things can happen to anyone, at any point in their lives – I never thought it would happen to me.
After my Crohn’s diagnosis, I realised that I want to prioritise the things I love, people I love, and my overall health. One thing that I have always loved and dreamed of being able to do more of is travelling. I had six weeks off of university for the semester break in June and July, so my partner and I decided to make the most of that by traveling to Europe and the U.K. I have travelled interstate multiple times, and overseas three times prior to my diagnosis of Crohn’s, however I knew that this trip would be a lot different and require some extra planning and preparation on my behalf.
I did a lot of research on the places we were going, tried to learn a few sentences like ‘where is the nearest toilet?’ in different languages, and looked at each country’s laws regarding medication, or if you need to pay to use their toilets in certain places. I informed my specialist of where I was going and asked him for a note about the medication I was taking and made sure I’d have enough supply (plus some extra in case I became stuck somewhere). I also made sure to add travel insurance that would cover me if I ended up in hospital.
A couple of weeks leading up to the days before we left Australia, I entered into a flare up. This then brought on anxiety over going, and I doubted if I had made the right decision. I ended up getting on that plane excited, but unsure of if I could rely on my body to be okay for six weeks away from home and my family. I faced some challenges whilst away, as my body wasn’t tolerating my medication anymore, however I was okay and ended up having the best time. As soon as we were home, we wanted to plan the next trip.
One month ago, I started fortnightly self-injections of Humira, because my body stopped responding to the medication mesalazine which I had been taking since last year. I am hoping that this might be the medication which leads me into remission, however if not, I have a very open mind about all areas of treatment. I had a fistulotomy on a peri-anal fistula in April, which healed very nicely. Now it’s just a waiting game to see if my body responds positively to this medication.