I am a PhD student. I am many other things, too. For example, I have MS (I prefer to say ‘have’ rather than ‘suffer from’). MS is short for multiple sclerosis: a chronic, auto-immune and neuro-degenerative disease. This means that my body attacks itself – my central nervous system, to be precise. Your nerves control pretty much all of your body: your muscles (and sphincter muscles), sensations (numbness and tingling), speech, concentration, and so on. Because of that, potentially, everything is ‘under threat’. And then there’s the physical and mental fatigue, which is difficult in itself. Having said that, not everyone who has MS will have the same symptoms (or all of them); MS is said to have a thousand faces. No doctor can predict how your individual case will develop, and while nowadays there are treatments that may help slow down the progress (if you’re willing to accept the risks and side effects), there is no cure. You simply have to live with it.
Now, I’m not going to use this space to provide a description of MS (there are many websites, such as this one, which do this very well). Nor am I going to give general advice on how to deal with doing a PhD and having MS at the same time. Instead, I’d like to share part of my personal story of living with a chronic illness and how this has affected the way I view my PhD. By doing so, I hope my story will speak to other people who are dealing with similar issues. You are not alone.
There were two good things about my diagnosis: a) I had an explanation for my physical and mental symptoms, and b) it was made when I was already one year into my PhD. I’m not sure I would have had enough self-confidence to undertake such a ‘daunting’ project if I hadn’t already started it – and what a terrible mistake that would have been. Having done one year of research, giving up wasn’t an option. However, the first few months after my diagnosis were a period of huge doubt, fear and uncertainty for me. I simply couldn’t get my head around anything other than myself and my condition. My ever-so-supportive supervisor advised me to take a few months’ suspension, which, after some deliberation, I did. This break from my PhD happened to coincide with the summer months, so I ended up spending some of the time exploring the Greek islands, some of it finishing another project that needed my attention, and some having regular psychotherapy.
In hindsight, taking the suspension was one of the best decisions I’ve ever made. It gave me the time I needed to find myself again and see my PhD from a different angle. Yes, I feel vulnerable and yes, my fatigue makes sustained working and travelling (to conferences, for example) difficult. Some days are good and some days aren’t so good. But I’m enjoying what I’m doing and I can’t imagine doing anything else. I’ve come to realise that the years I’m spending on my PhD will be probably be some of the best in my life: doing something I love, being my own boss and having flexible working hours. Doesn’t that sound like a dream job (well, except for the lack of money, of course)? I’m looking forward to everything that’s still to come: completing my thesis and sharing my findings. What I’m not looking forward to as much is what happens after my PhD: will I be able to find a job (okay, I could end the sentence there!) with my condition? When will I tell my prospective employer? (This article sums it up quite nicely.) Will I be able to make enough money to earn a living with fewer working hours? So many questions costing me so much energy – which I don’t have in excess! But then I remember the wise words of my therapist: ‘We’ll cross that bridge when we come to it’. Also, I’m trying not to compare myself with other PhD students (comparing ourselves with others is something many of us tend to do in general as well). Constantly asking myself why I’m not as far along in my research as other people who started at the same time as me isn’t going to help me. It’s just one more item to tick off on the ‘things-that-cost-me-a-lot-of-energy-and-aren’t-worth-it’ list.
I still have doubts, fears and uncertainties today, but I’ve come to see my PhD as an ally, not as a burden. My thesis and I are forming a partnership; sometimes we get along well and, at the best of times, we even stimulate and encourage each other. Sometimes we go through more difficult times and one of us needs more attention than the other – occasionally at the expense of the other. But, in general, we try to accommodate each other’s different needs: if a deadline is looming and I’m having a bad day, the PhD comes first and life is more difficult; but my PhD won’t sack me if I have a period when strenuous work is impossible. In many instances, my PhD is a bridge over troubled water, so to speak – the thing I can hold on to when I worry about the future. It will always be there and it won’t leave me unless I decide that’s what I want. It gives my life sense and continuity: the things I need the most. That’s how my PhD is helping me, and I feel thankful for that.
I have decided to write this blog anonymously. My condition is not a secret, but it is something personal – something that I do not (yet?) feel comfortable sharing with the ‘worldwide’ web. Besides, while MS is part of who I am, it is not everything I am.