Lessons from Writing a PhD with a Chronic Illness

Written by Amber Davis 

I wrote the first half of my PhD when I was healthy, or at least healthy enough to function ‘normally’. I suffered from low energy, and had a collection of intractable seemingly unrelated health issues pop up regularly, but they were manageable. With lots of self-care I was all right. That changed from one day to the next when the disease that had been lurking in the shadows decided it was on top and my health crashed spectacularly. I didn’t find out until over six years into it what that disease was: Lyme disease (Borreliose), a bacterial infection caused by a tick bite, as well as co-infections, that weaken the immune system and mess with every other bodily system you can think of. In my case it looks a lot like chronic fatigue syndrome or M.E. (I am aware of the controversies surrounding these labels and conditions. Not saying these are the same). Unfortunately: no cure, though there are things that can be done to improve, maybe even get to remission. In the meantime though, life goes on, which was the first thing I learned, even before my diagnosis, living with what I still hesitate to call a ‘chronic illness’. Where before my falling ill I might have a life crisis and I would lay low and it would solve itself with time and a bit of effort, no such luck this time: seems I would have to go on living with this massive part called health unresolved. After years of being too ill to do anything at all, let alone think about work, I decided I would try to finish my PhD. I had to go about it strategically, as there was not a drop of energy to waste. This is what I learned:

1. Do You Really Want to Be in Academia?

   Living with a limiting health condition means having to be true to what you really want, as anything else no longer seems to work. There is far less leeway. Far less room for manoeuvre. That seemed to be very much the case for me, anyway. Having to deal with severe energy limitations, I noticed the only things I successfully managed were those that lit a spark. Finishing the PhD was not at all self-evident. To be honest, I didn’t much care about it for years: I had bigger fish to fry, namely trying to get my health back to a place where I would be able to enjoy life instead of enduring it! The PhD seemed insignificant in comparison. At some point, however, I realised I was still interested in my project, and figured I had nothing to lose. There was a chance I might manage (though I didn’t dare say this out loud) so why not try? Most importantly, when I decided to finish my PhD it was because I felt compelled to. That didn’t mean it was in any way an easy road, or that I didn’t have doubts about it - in many ways it was a bit of an insane plan - but I knew I wanted to give it a go, at least
   I believe the essential question to ask, when you are at a cross-roads with your health and work life in academia, is: “Do I want to be here at all? Do I want to be in academia?” That difficult question has to be answered before bothering with: “How am I going to manage?” Being ruthlessly honest about motives and circumstances, about whether an academic position adds to your being fulfilled, whether it is good for you, or whether it drains you further, and whether continuing down the same road is feasible, is required. Circumstances change: maybe academia was right for you at one point, but no longer is. Or conversely: maybe your health meant you had to drop out for a while, but has now improved to such a level that you will manage, and you find yourself longing to get back. Learning to distinguish when a ‘yes’ is a real, true yes, is very much a learnable skill. One way of knowing is to pay attention to how you feel about certain options: if an option such as finishing your PhD feels expansive, exciting, even if it may be daunting, that indicates a ‘yes’. If it makes you shut down, even though you want yourself to pursue it for reasons such as not wanting to be a ‘quitter’, feared loss of status etcetera not so. It is OK to quit, even if fellow academics are not likely to respond favourably to your doubts about pursuing an academic career. Similarly: don’t let anyone dissuade you from working in academia, or pursuing a project. Give yourself permission to make your own decisions.

2. Prioritise Your Work and Do It Your Way

   For me staying in academia meant I had to find a way of working that wouldn’t exhaust me further. In practice that meant being strict about my work hours. In the morning I would work three hours, and that meant absolutely no interruptions. If I had energy left, I would also work an afternoon session. That way of working, of making the most of the energy I had by focusing in, worked very well. (It works well also if you have no energy limitations. Focus is everything.) But it meant a lot of boundary setting. No Internet surfing or picking up my phone during these hours. I made a point of switching everything off, including the Internet, which helped. I also started working in 45 minute intervals, further improving focus. Whereas before I wasted a lot of time in the twilight zone of distraction, those days had to be over for me to be able to function at a level to get my work done. These new work habits made a world of difference. A crucial aspect also was working for no longer than was sustainable. My old habit was to push past the fatigue, and to try to keep going no matter what, even if it was going nowhere. It took some courage to change that and indeed stop after what felt like not long at all. Saying: ‘this is enough for today’ can be daunting. Over the long run, though, I learnt to trust my new habits, and it got easier. It actually worked!
   Mentally a new habit I had to form was to not engage so much with the negativity mindset (this is never going to work, what if my work isn’t good enough, I’m never going to meet that deadline, oh this is so slooooooow, why am I even trying etc.) that often comes with academic work, even without the added obstacle of illness or exhaustion. The worry was such a strain. It didn’t seem to solve much, either! What if I could train myself to skip the worry part? Seems a bit outrageous, and certainly doesn’t conform to norm seen the general tendency towards suffering and self-flagellation in academia, but it might free up some energy! Worth a try. Meditation was my method of choice to learn to not stay stuck in worry. (Practice, not perfection, always.) It helped me make my worries manageable by teaching me to be me be far more aware of how I was spending my emotional energy. It also helped me learn to shift my focus of attention to more positive states or activities when my worries threatened to get the better of me. Another practice that helped was truly engaging with what I was doing. It is quite impossible to be focused - say on working on a chapter - and worrying about it simultaneously (though no doubt I may have managed at times). I tried to be more aware of my focus, both in terms of what I was doing, and what I was thinking. Mindfulness basically.
   The other, very practical, thing I needed was time. Although I did finish my PhD much faster than expected once I got back on track, when I was at my most unwell working was out of the question. I had to ask my department for extensions again and again. I believe I was the person with the longest history of sick leave in the entire institute ever! Which leads me to the next point:

3. Ask for What You Need

   Depending on your disability, illness, or other obstacle, you may need to inform your department/ supervisor/ colleagues of your situation. Academia is an odd place: on the one hand it tolerates diversity rather well, and people tend to be friendly and open-minded, on the other it can be a wildly competitive place, increasingly so, where everyone is madly competing for limited resources. Ideally we would be able to discuss our health issues freely, if necessary. Yet one immense burden of having a chronic (invisible) illness or disability is not being heard, or understood. In less fortunate cases you may even be bullied or taken advantage of, or as was the case for me: somewhat neglected. At some universities (often the more prestigious ones) I can’t quite wrap my head around the level of machismo and politics. In most a lot depends on the influence and willingness of the person in front of you.
   I generally believe in being open about your condition to the extent that practical considerations require. More if you have someone you particularly trust. In my experience people tend to respond well to concrete requests which may help you function, and being pragmatic about your needs is extremely helpful. I probably don’t need to tell you that chronic illness or disability is often so far out for people - even those who wish you well and want to help - that they simply cannot imagine what you might need. If we have the need part figured out for ourselves, it helps tremendously. It is so important. And please do advocate for yourself! I know I felt shame because I could no longer keep up, but at one point I decided that if at all possible I would try to not bother with the shame and guilt and negative emotions as much (being unwell was burden enough, thanks!) and I would go for what I wanted and ask for what I needed, without them, if at all possible. It was a wise decision. Thanks to a supportive supervisor I got much needed extensions of my PhD programme, again and again. Even so, I had a plan B. I was well aware that completed PhDs still meant income for Dutch universities, so I considered potentially finishing my PhD at another university than where I’d started in Italy, if an extension would no longer be granted.
   When negotiating, be strategic in who you choose to talk to. Unfortunately some people don’t ‘get it’ until they get it, and they are best avoided. Even so, one person blocking your path doesn’t mean the end of the road. Friendly networks are important in academia and knowing people will open doors. So do try to invest in finding the right people to know and collaborate with. Above all: do not let yourself be diminished by clueless people. This is your life. They have no say in it. And they certainly have no say about your worth. Do not let them mess with your head. I feel strongly about this. Being unable to conform can be hard on our self-esteem. I notice I do much better when I give myself the benefit of the doubt. In fact, I believe this is what we owe ourselves. And what allows us to be not so ‘disabled’ at all!

End of story: I did finish my PhD and it was well received, as the best thesis of the department that year (let me brag: best of 34 political science PhDs). I also finished it well within the deadlines, to my own astonishment I must admit. I came a long way with a few small habit changes and a lot of persistence! After finishing, I decided to leave academia, and teach young academics what I had learned the hard way. I now coach PhD students and other academics, and run an online course to support wellbeing and productivity in the world of academia. Do get in touch with your questions or story if you think I might be able to help.

About the Author

Amber Davis is a political scientist and academic coach and holds a PhD from the European University Institute in Florence. She blogs at www.amberdavis.nl which also hosts the HappyPhD online course that will help you write your PhD (almost) effortlessly.