Academia: No pain, no gain? Jet's story of illness, diagnosis and the road to recovery

After reading Lauren’s and Currer’s stories that chart their experiences with depression during and after their PhD studies I was struck by the common threads about frequent occurrences of physical symptoms such as pain, fatigue, exhaustion and, unsurprisingly, lack of motivation. While studying at MA level when I was a part-time student with a young baby the experience of constant fatigue, headaches and short tempered mood was so common I just accepted the conditions as a normal part of my life, a consequence of having to work hard to achieve the much desired academic goal of a higher degree. This isn’t to say there were never good moments in my life at that time, but I am amazed at how the whole culture of academic postgraduate study normalises over-work and the many stresses that go with it. If you’re not anxious over the quality of your academic performance then you’re perceived as a slacker and as someone who doesn’t care enough. Academia expects postgrads to show how passionate they are about their subject and that passion often is performed through personal sacrifices. While this expectation is never made entirely explicit, it is certainly implicit and internalised by PhD students. Unfortunately those personal sacrifices can materialise in poor physical and mental well-being. My experience of sacrifice also moved in this direction and had a devastating outcome during my second year of PhD study. I should have seen the bad signs when I was studying at MA level, but the reward of finishing with a Distinction and being patted on the back by my tutors, academic husband who saw moving on to PhD as a natural progression from a successful MA, was enough to fuel my energies to carry on in academia, in spite of it all.

I relate very much to Lauren and Currer’s hesitations about accepting their ailments as those that were related to depression, or as Currer’s physician put it, her ‘pain was mental…Mental like your body no longer realizes how to process serotonin and so you don’t sleep and you always feel anxious’. The culture of academia in many areas relies so much on an ideal of the rational, knowing subject who is in ‘control’ that is difficult to admit to feelings of vulnerability or instability, especially when connected with one’s mental health. In Lauren’s and Currer’s cases, drawing on therapy and anti-depressant medications were positive solutions that helped set them in more positive directions during and after their academic and post-academic anxieties. My experience of illness, I am convinced, was prompted by frequent anxieties about my work never being good enough, which led me to work into early morning hours, often having to still wake early with my two young children and then research/write and/or teach in the day. At this time my daughter was only five and my son eight, still young enough to have many demands and the usual run of illnesses that required them to stay at home from nursery care or school. With my mind often racing with work-related ideas or worries I frequently experienced sleep problems. It was unsurprising that fatigue and regular headaches (from a longer history of headaches) was a norm in my life. Wasn’t this all part of the course in academia, I justified to myself. I watched my academic spouse work extended hours to be able to succeed in his career and I knew I would have to pay my PhD dues as well. When I continued to experience back and neck ache from spending so much time at a desk I told myself that more exercise would solve everything, from the endless stream of colds and sinus infections to the headaches and sleeplessness. The problem was the more time I allowed myself to spend on exercise or have family time, the more I felt I had to make up my lost research/work time. So the endless cycle of work activity continued until my body finally screamed out for help. It had enough.

Bhumika Bhatia via Compfight

After I had recovered from a sinus infection I experienced a strange numbness in my mouth on the tongue and then the inside cheek area. This was around the same time I found I was forgetting things like my own phone number, which I laughed at and put down to being overloaded with academic reading. The sensation moved to my neck and face with tingling and eventually to my eye when I ended up with double vision. A doctor friend reassured me and said it must be shingles – very common, don’t worry. This came during the Christmas break so I was pleased to have some time off.

When the vision problem occurred my husband got me to the doctor who referred me to a neurology consultant for an MRI. The results showed I had multiple lesions on the brain but he never mentioned Multiple Sclerosis at that point. We were all relieved I didn’t have a brain tumour and I was told this was ‘inflammation’ that can occur after an infection. The double vision lasted almost a month and the tingling/numbing eventually passed – I was happy to move on and forget about it. It wasn’t too long afterward that when a full, second ‘episode’ occurred which knocked me back completely. Soon I was in bed, the whole body numb and it was difficult to move and walk. I made it to the hospital for more consultations and later tests and Relapsing Remitting Multiple Sclerosis was confirmed. I was in such a bad way, both physically and mentally, that I had to suspend studies straight away. In the end I opted to take a year out of studies with the full support of my supervisor. After a short fix of steroids it took months to recover more fully and longer to begin to feel a bit ‘normal’ again. My option of weekly injections of Beta-Interferon (which I gave up on) caused horrible side-effects including more headaches and the possibility of depression. Well, at that point I finally admitted I had a lot to feel depressed about and I was indeed pretty miserable. I took antidepressant meds which were initially prescribed to help take care of the numbing sensations but they also helped the mood problems. The UK National Health Service even offered a free counseling service through the General Practitioner's office. I put that on hold until I was ready to face the range of issues that all of this introduced.

Eventually when I was well enough to get around physically I searched for therapies that would help me recover psychologically. Much of this recovery process had to do with my perceptions of my new health condition, and the rest had to do with how I would proceed with the prospect of carrying on the PhD. I had experience with therapy in the past and found many benefits, but this time I saw that my pattern of anxiety and worry around academic work, in particular, possibly needed another method of care. I tried acupuncture for a bit as a way of attempting to manage some of the physical pain and other symptoms and also because I heard its value could be found in the talking part of the consultation.

Later I tried hypnosis and found this option very rewarding. We spent lots of time talking about my history of anxiety and current state of health with RRMS. I was a good hypnosis subject for sure, as I was able to go under so easily. My hypnotist structured the session especially for my needs and later made me a recording that I could use on my own, which I used regularly and still use every now and then in my present life. The hypnosis as a form of therapy helped me return to my studies with more confidence but also helped me to begin to think more about what I really wanted out of my working life in the future. It was at that point that I had major doubts about pursuing an academic career. I thought, if I carry on it will have to be at a slower pace and on some of my own terms. I considered giving the PhD up (I felt so much better when I had time away from it) but I could not escape the feelings of ‘What if?’ Having got that far I talked myself into finishing (and all my academic colleagues and husband pushed me in this direction too) and told myself if I hadn’t found a permanent academic post, preferably a part-time job, a year or so after graduation then I would rethink my choices. It all became much more complicated later on when I did finally find myself in transition out of academia. There were no permanent part-time lecturers’ posts in my field within a reasonable distance from home. By this time there was a new government in office in the UK and Higher Education cuts were brutal across the arts and humanities. I continued contract teaching, but I was really just buying some time before I had a better plan in mind. In the back of my mind, particularly since my MS diagnosis, I think I always felt academia was not going to work for me. I didn’t want to return to the culture of self-sacrifice at all costs. If I was going to manage this new chronic health condition, avoid future relapses and stay on my feet I had to take care of the self and say no to academic craziness.

My story of ‘therapy’ and ‘recovery’ from MS, or at least recovery from the impact of a devastating MS episode, and academia is a bit complex. My Relapsing Remitting Multiple Sclerosis did not come on merely because of academia – it would have visited me at some point -  but these early episodes, I believe, were triggered by all of the stress and anxiety that the PhD studies brought on. In a way I am grateful that having MS has forced me to rethink carefully the way I need to manage my working and family life. It has forced me to think hard about what I really want and about what makes me happy. For me, MS and a teaching/research academic career are a bad match. It’s taken some time to get to the point where I have accepted this fully and found ways to look outside of academia for meaningful work. Living with MS means I am reminded that nothing in my future can ever be certain. MS is what some have called ‘The unwelcome visitor’. But I’ve realised also that life itself introduces a whole bunch of these uncertainties every day. In some ways that realisation has helped me when planning my exit out of academia into a different, unknown work-sphere.

My advice around coping during your postgrad studies and/or when dealing with the many anxieties when transitioning out of academia is to pay close attention to the signs that your body is giving you and don’t dismiss them as just another ache and pain and sacrifice that goes with the PhD territory. We need to reject the ‘No pain, no gain’ mentality and begin to take care of the self in ways that will accept the limitations of the body. Listen to your own instincts, take care when care is needed, and be open to a range of therapeutic options that might be available to you.