Illness in the Ivory Tower: Coping with chronic illness in academia

Written by Scott Elias 

I have spent my whole adult life in Academia – the kind of person who just fell in love with university life as an undergraduate, and have stuck around this stimulating environment ever since. Since I began my ungraduated studies in 1972, that makes 44 years, including eight as a student, 20 as a professional researcher, and 16 as a lecturer. My health started to break down in 1986, and I was diagnosed with ulcerative colitis. I had my entire large intestine removed in 1991, which should have dealt with the colitis, except that new inflammation developed in my small intestine, so I was re-diagnosed with Crohn’s disease. I have lived with an ileostomy for 25 years, and the hole in my abdominal wall that this caused has torn, necessitating several parastomal hernia operations (I’m facing another one in a few weeks).

So that’s my tale of woe, in most of its gory details. I thought you needed to know that, so that you could appreciate how I have been able to cope with my problems in an academic setting. 

Much of my research involves field work in remote regions of Alaska. This presents challenges for someone wearing a stoma bag, but I have managed to cope pretty well, all things considered. Ostomy bags have an adhesive to they stick to your skin. In the 1990s, this adhesive material was rather heat-sensitive. I found this out the hard way when I was doing fieldwork on the North Slope of Alaska, about 1000 km from the nearest source of replacement bags. I had foolishly left my stoma supplies in the truck (boot) of a rental car, and they got over-heated on the long, two-day trip north from Fairbanks. I managed to get a few days of fieldwork done, but then ran out of serviceable stoma bags.  I made it back to Fairbanks before the last one leaked. I do not recommend 1000 km of driving on unpaved roads, especially all in one day, but it’s amazing what you can do when you must.

One of the most difficult aspects of fieldwork for me is simply finding the energy to carry out the necessary tasks. Crohn’s is an auto-immune disease, and it drains the body of energy, especially during flare-ups of the disease. When this happens, you simply have to take care of yourself: get extra rest, shorten the work day, and ‘look out for number one.’  I have a colleague with whom I share another auto-immune disease – ankylosing spondylitis. He has had to learn the hard way that when he pushes himself doing fieldwork as he used to do before he got AS, he just crashes - sometimes ending up in a hospital. I sympathize, because field work is very intellectually stimulating. It scratches a deep itch for Quaternary scientists, who like to dig through dirt, find precious samples, and bag them up for transport back to the laboratory. But, in the end, I have had to learn to delegate much of this to postgraduate students. I direct where they dig and where they take the samples, while I take pictures and write sample bag labels.

Work at the university is much easier to deal with. My biggest hiatus from teaching came last academic year, when the surgical incision from a parastomal hernia repair in January (2015) just refused to heal properly, and kept getting infected. I managed to teach nearly all of my third-year course last spring, although sometimes this meant getting out of bed, getting dressed, my wife taking me to the college where I delivered a one-hour lecture and went straight home to bed again. All credit goes to my departmental colleagues who took on extra teaching for me, and to my head of department, who did a great job of juggling things around to make it all work.

I think the key to making such things work is open, honest communication. When I am having difficulties fulfilling my duties because of my medical conditions, I talk to the people who will be affected by it.  I have dealt with six different heads of department during my career at Royal Holloway, and they have all been sympathetic and helpful. I used to lead an undergraduate field trip for physical geography students. This is a physically demanding week-long job. I was able to cope with the stresses back in the early 2000s, but I cannot cope at that level any more. Again, my head of department found a less demanding role for me: academic coordinator of a local field trip that is run by a colleague. So there are ways around obstacles such as these, but the key is advanced planning and lots of communication. When I first had the ileostomy, I read a book entitled ‘Never Apologize, Always Explain’ by Patricia Stout Skilken. The book’s title explains her philosophy about having an ileostomy.  I believe she has the right idea, because when I have explained my situation to colleagues, we have found solutions to the problems. I encourage everyone in Academia who has a chronic illness to be open and honest about it. Believe  me, it works much better that way!

About the Author

Scott Elias is a Professor of Quaternary science at Royal Holloway, University of London. His main research interest lies in the reconstruction of past environments, using insect fossil evidence.

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.