IBD: abroad edition
Making the transition to college with IBD was hard enough in the United States. No matter how far (or close!) I was to home, there was a new routine I had to create to manage symptoms and new people to tell about IBD. But this did not prepare me for what studying abroad would be like with IBD.
Personally, I am someone who wants to go everywhere and do everything, and I will always accommodate my illness after making my decisions. This year, I am studying for a full year (scary -- I know) at the University of Oxford in England. Thankfully, the United Kingdom has a nationalized healthcare system that I could be part of as a student at one of England’s universities. A benefit of this Oxford program is that there are only 3 eight week terms, so I have massive six week long breaks between them. I love traveling so I am determined to spend all my vacation time traveling around Europe, seeing every corner of the world possible.
In order to travel and live somewhere else with IBD, I know that you have to be proactive. I ordered my medications in advance, planned how the new foods would interact with my diet, and registered with the healthcare system in advance so I could start receiving treatment upon arrival.
As my first term started in the beginning of October, I spent the month of September traveling around Iceland (for the nature) and Spain (for the language). Managing my IBD was easier than I thought it would be; the quality of the food was generally less processed and the meal portions were generally smaller, which accommodated well with my diet -almost better than it does in the United States!
However, arriving in the United Kingdom felt like a beast within itself. I had spent months over the summer trying to register with the GP (which is the equivalent of a primary care doctor) so I could speak to a gastroenterologist in advance and have all my treatments sorted out before I arrived. Turns out, even with the new advances of Telehealth -- thank you COVID 19 -- the National Health Service (NHS), the universal health system in England, was unable to allow me to meet with a gastroenterologist prior to my physical arrival in the UK.
Everyone with IBD has worries about studying abroad. For me, my biggest worry was accessing my infusion treatments. I have Remicade infusions once every eight weeks. My last infusion before leaving the United States was on July 22, so my next one should be around September 22, give or take about a week. I was only able to get an initial appointment with a GI on September 28th. However, when I turned up, I was told that I had to send in more paperwork from my US doctor, get a clinical review at the IBD clinic so they could approve my treatment, and secure a date for the next possible infusion. By October 7th, my UK doctor finally got back to me, saying that the next available date was October 20th at 11am due to high demand.
Now, it's truly not worth explaining how the Oxford University teaching system works, but pretty much I only have two classes called ‘tutorials’ that meet for one hour a week. They have between one and three students in each tutorial, so it is painfully obvious if a student is not there. My tutorials this term are every Wednesday, one at 11:10am and the other at 2:15pm. I bet you can guess which day of the week October 20th falls on.
This is where I am now - I have been told that this is one of the only time slots they have available and it falls directly on the only time of the week I cannot do. Most of the time, I would not be bothered about missing a lecture or class for a doctor’s appointment as vital as this one, but I only have a single one hour tutorial a week for each class so it is difficult to justify not attending it. I also haven’t received my accommodation letter because I have my meeting with the Disability Advisory Service next week, despite turning in a request to meet with them months ago. So I don't even know whether I will get the support of the university to miss my tutorial until next week. Even though I know that health does come first, sometimes the consequences it comes with - uncomfortable conversations with professors I have never met before, mysteriously being absent from class where my peers do not know where I am - makes it difficult to deal with. At the same time, I really do not want to be missing this appointment since October 20th is already almost one month overdue from my last infusion.
When I got the email earlier today with the timeslot of the next infusion, I honestly just slumped back in my chair in defeat. Then, I burst into tears because I just felt so sad and angry that this all happened. I was sad that I would have to continue living with my symptoms - which at this point were lots of fatigue and stomach pain - without this treatment, and I was angry that I had spent so long (literally months) to prevent my illness from getting in the way of my academics but was unsuccessful. Knowing my health has to be my number one priority over other parts of my life that matter to me makes me feel like I've lost a bit of control. Even worse was the fact that the usual support system I had back at college, the one I would go to complain or let out how I was feeling, was completely gone.
I guess the point of this story is to say that when traveling abroad with IBD, you can do everything right and things can still go wrong. You can try to prepare for every situation and prevent problems from happening, but a new environments inherently mean that you cannot predict exactly how things will turn out. But that is OK. People who have IBD know that predictable enviroments are always optimal but never realistic. We cannot escape this illness that is IBD; we can only truly come to terms with it and accept it. This is an ongoing process, one that will probably never truly be over.