Live in the Now - Some Strategies to Tackle Academia with Chron's Disease

Written by Katharina Spiel 

I am an overachiever and have Chron's. Both things that are more or less affecting my life. I love to be in academia and back in 2008 I started my second bachelor already with the goal of being in academia as long as possible.  My first really bad episode of Chron's came in 2009. I struggled managing class attendance and basically fell back by a year at some point. However, I learnt to deal with things my way and am now on the path to a PhD even if it is an even rockier path than I thought it would be. Here, I share some strategies that seemed to work for me. They are in no way complete and are partly intertwined with other conditions that I deal with in different ways.  You'll find some tips that might or might not work for you and might or might not work for certain conditions. I'm happy to learn more about others' approaches and what they have learned as well, so please do contact me at katta@chronicallyacademic.org.

Be radically open about it - if you can

A first principle that I have established with my Chron's is that I'm radically open about it. That means whenever someone is asking what is up, I'm explaining that I'm in an episode and what that means. For some people, that is hard to take in.  Let's face it, there's some 'yuck factor' when you hear about it the first time and there is a taboo about bodily functions in middle European societies. It's also worth it for me every time someone tells me "I just got diagnosed with an inflammatory bowel disease and knowing that you have it to helped me come to grips with it and tell at least someone about it", or even just "having heard you talk about your ileostomy made it possible to bring up the issue with my grandfather and make sure he knows that there is someone to talk to". Being radically open about it is my contribution to a normalising it, because when I can say that I'm having an episode and people know its connected to many bathroom trips and an overall exhaustion, I get personally more of an understanding, but in the end others don't have to go through explaining what it means.  That approach is kind of difficult to do though, because people can't help their initial yuck reactions when you first tell them. So it's not for everyone (and shouldn't be expected from everyone).

Negotiate the possibility for distance work from home

I made sure that - even though that is technically intended for parents - I could work from home at least partly when I have episodes.  My contract now allows that I can flexibly stay at home and work from there (if my direct boss agrees, which they always do, to my luck).  However, that also means that I structure my tasks constantly on whether I can do that in the home or whether it requires access to office resources. And I always try to have some tasks on my "can be done from home" list.  There is also a set of essential books or papers, that I drag around and change on a weekly basis, so that when I, for example, write papers, I can do so at either place.  Being that organised allows me to relax and judge without work stress whether I have enough spoons to go to work, enough to work from home or should call in sick.  That extra option in-between is perfect for me as a large amount of sick days also stresses me tremendously.

Have hobbies outside of academia

 On the other hand, what helps me a lot is having hobbies.  Some of them are active (like Roller Derby), so they are really only an option outside of episodes, when I have enough energy.  I have found though that sport helps me be relaxed more in general and made me watch my food with more purpose, which combined leads to fewer episodes. This is sometimes not an option and I'm aware that I am privileged in that I can do this now.  There have been times when I couldn't pick up a sport at all because episodes were coming in such quick succession.  Another hobby of mine doesn't require me to be active or alert, but rather just occupies me; crafting and in there mostly knitting, so I'll concentrate on that.  The great thing about knitting is that these days I can mostly do it without paying too much attention, especially with large but not very involved projects. These get mostly done during my sick days. But when I come out of an episode and see that I got a bunch of centimetres made of my skirt, I at least feel like it wasn't a complete waste of time even though I didn't have the wherewithal to go to work or do anything cognitively challenging because I was so exhausted. 

Keep your goals in sight

Now, I don't want to claim that it doesn't suck royally from time to time, when there is this conference you wanted to go to and you can't on short notice, causing stress for you and a replacement and making everything worse in the meanwhile.  However, I try to take these set backs and acknowledge them. By that I mean I realise they are there, evaluate their impact and reassess the next steps towards my goal.  For example, if I wanted to attend a conference, because of the community and exposure, I assess whether another conference could do that as well and/or when the next conference is coming up and how my time schedule has to change to accommodate this. That way, I never loose sight of my goal because of obstacles in-between.