Overcoming Hurdles During My PhD

Written by Alex 

Deciding to do a PhD is an enormous life decision. It's something that will take over your life for at least three or four years after you start. Overall, it's been an amazing experience for me, and now that I've come out on the other side, with my doctorate in hand, I've had some time to reflect about navigating the experience as a student with a disability. My PhD is in Arts and Humanities, so this post reflects my experiences in that faculty.

I have an invisible, physical disability. It's something that varies from day to day. My condition is genetic, which means that it will never go away, and it's something that I've had to learn to cope with. If I'm honest, I didn't really learn to manage my condition until the end of my masters degree. I realized that I couldn't keep working myself into the ground, and that it was much better to take a bit of time off and refresh, so that I could keep going.

In terms of choosing a place to do my doctorate, I was lucky enough to get a funding offer at the same place where I had completed my MA. I hadn't really thought about disability support when I was applying, as I knew it was such a game of chance anyway that I'd be lucky if I got anything. Once I got my position though, all the documents were in place so that I could continue receiving the same support I'd had before.

The system slightly changed in terms of finances - it was my funding body rather than the Disabled Students Allowance that supported me now. But, I found this process quite straightforward as I already had all the required documentation. To be honest, I don't really remember much about this application process, just that the staff at Disability Services were really helpful in getting me sorted.

For me, it was important that both of my supervisors knew about my disability and understood the impact it might have. I use a voice to text software called Dragon Naturally Speaking, which often makes interesting word choices, such as ‘surgical’ instead of 'liturgical’ and taking issue with my use of the past tense. Consequently, my supervisors were a little more lenient with mistakes in my work, in instances where it was clear that it was Dragon making the mistake and not me. Also, one of my supervisors had an office three flights of stairs up. That's not something I'm able to do, so we always met somewhere else. I think being open with my supervisors enabled them to better support me in my studies.

In terms of other students, my disability was not really something that came up much. I sometimes talked about my 'joint problems', but usually only when I was explaining why I couldn't carry things or needed to sit down. I slowly became much better at acknowledging when I needed to sit down during the drinks after evening seminars. Initially, I would just stand like everyone else, but now I’ll seek a seat if I’m struggling.

Another thing I had to learn was to take time off. Doing a PhD is a bit like a job, although it seems to be not so much 9-5, but rather 24/7. You'll see people tweeting about working at all hours, and there seems to be a really unhealthy culture of boasting about how much you're working. This really isn't helpful. One of the most important things for me to do to manage my condition is pacing - pacing myself not only through the day, but also throughout the week, to make sure that I don't burn out.

While I was doing my thesis, I didn't work for two whole days per week. Initially this was just two days throughout the week, one weekday and one day on the weekend, and then it changed to taking the entire weekend off. On these days, I didn't respond to emails or do any work. I might have done the odd bit of reading or teaching prep, but nothing too strenuous. If I hadn’t taken this time out, then it would have had a negative impact down the line. For me, it was much better to have this time off and getting enough rest than having to take at least a week off every couple of months to deal with the burn out. This is a difficult thing to do, particularly when you feel that the people around you are working harder than you, but the most important thing is taking care of yourself.

One thing I wish is that there was more of a community of disabled students. This really wasn't the case for me. I know there are issues around disclosure and so perhaps some people are scared to admit they're having problems. I did find a community on Twitter though - I've found lots of other people in academia, who are disabled, or who have my condition - #spoonie and #eds for example.

A final piece of advice would be to not be scared to ask for help, and to make sure you ask what is available for you. For example, my university has a computer suite with adaptive technology, which I only found out about at the end of the third year of my PhD, nearly four years after I joined the university. I now employ a policy of 'don't ask, don't get' - the worst that can happen is that someone says no. It can be tough sometimes, but for me this ultimately meant that I received the support I needed to complete my doctorate. 

About the Author

Alex just completed her PhD in an Arts and Humanities Faculty. She has an invisible disability called hypermobile Ehlers Danlos Syndrome. hEDS is a collagen disorder, which means that Alex’s ligaments are too stretchy. Among other things, this causes chronic pain. She also blogs about phd-ing while being disabled and wearing a 'Please offer me a seat' badge on the London Underground at  https://pppphd.wordpress.com/

Coming back to work after a long illness

Written by Raul Pacheco-Vega

Raul has kindly given us permission to re-post this article from his own website. The original can be found here:

Coming-back-to-work-after-a-long-illness

If you followed my Twitter feed in the past couple of weeks you’ll know that I fell really ill right after my two weeks of fieldwork in Madrid. My family doctor says it was a combined influenza plus overexhaustion plus almost-pneumonia kind of illness, and he got me on a two-week course of antibiotics (one week of injections and one week of pills). I am barely finished with the antibiotics and have started feeling like a human again. The first week was terrible. I had to sleep 24 hours in a row, for two days in a row.

I learned a few things these past two weeks. The first one is that some people will not understand that being ill is not a choice, and that my main focus is, and should be on getting better, not finishing a chapter/paper/article. I think it is not worth working with someone who doesn’t understand the human aspects of academia. I don’t work weekends. I don’t work holidays. I don’t work when I am sick.If that doesn’t work for you, then I don’t want to work with you.

The second thing I learned is that I should trust my doctor when he says that I need to recharge my batteries and to choose my activities wisely. He said “you will have energy to do ONE thing per day. ONE. So, be wise about which activity you do each day while you recover”. That’s exactly what I did. For example, on Wednesday, I chose to promote the Bachelor of Public Policy program in Leon, where my parents live. It was exhausting and I needed to just keel over and sleep for an hour afterwards. On Tuesday, I chose to attend an important meeting with my CIDE colleagues. On Thursday, I chose to attend a meeting with our students. I didn’t worry about doing anything else. I only had energy to do ONE thing and I did it well. And then I went back to sleep.

The third thing I learned is that I should avoid forcing myself to do anything, particularly work, while I’m convalescent. Contrary to what many people may think, I have a very fragile physique. I have severe allergies (alcohol and lactose, just to start), and my immune system has been compromised since I was a child. I’ve had to take care of myself since I was very little, and while the past few years I was able to avoid falling gravely ill, this 2016 seems to have taken a toll on me way too early, and thus I need to rest even more, as my Spring semester is actually quite busy.

The fourth thing I learned is that I should only gradually come back to do my activities, instead of trying to Get Everything Done As Soon As I Feel Remotely Healthy. I have been doing one, two small things in addition to one big thing every day, and I feel much better.

And the fifth thing, which probably should be the first, is a reminder of something I already knew: no academic accolades are worth your health and your life. No matter how many papers you are supposed to publish per year, how many conferences, your health is and should be first.

About the Author

Raul is an Assistant Professor in the Public Administration Division of the Centre for Economic Research and Teaching (Centro de Investigacion y Docencia Economicas, CIDE, AC) based out of CIDE Region Centro in Aguascalientes, Mexico. His research lies at the intersection of space, public policy, environment and society. He is primarily interested in understanding the factors that contribute to (or hinder) cooperation in natural resource governance.

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.