Thursday, 18 August 2016

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.

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