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/

The Importance of Support

Written by Hazel 

I was asked to write about coping strategies that I have used as a PhD student with a chronic illness.  I have had mixed experiences as someone who was diagnosed at the beginning of my 3rd year, which made my funding situation complicated but also left me struggling to adjust to my abilities being different.

1. Accept the support that is available

   I disclosed to the Disability Service and my Department as soon as I had a diagnosis.  At my university in the UK you can disclose confidentially to the Disability Service if you do not want your Department to be made aware of your disability but in my case it was obvious I was ill so I decided it was to my advantage to make my supervisor aware of my condition.  I met with a disability advisor at my university who explained the sort of support available.  I had to provide a letter from my GP stating my diagnosis so that a needs assessment could be carried out at the local assessment centre.  The assessor was really kind and helpful and asked about how my disability affected my work and what help I needed.  At this point, despite being diagnosed with a chronic illness, I thought I would bounce back in a few months so I was reluctant to accept much help.  Several months later when I was really struggling I had to email my assessor and ask for further support which she approved and the university put in place. 
   My first coping strategy as a PhD student is to disclose to the Disability Service at your university and accept the support that is available to you.  For me that included daily taxis back to my house and a printer to allow me to work from home on the particularly bad days.  I was fortunate that a time came when my symptoms lessened and I could walk far enough to use public transport but if my health deteriorates in the future I wouldn’t hesitate to ask for further support.

2. Find someone to talk to from within academia

   As part of my support package I got weekly mentoring with a specialist disability mentor at my university.  My mentor works with students with a wide range of conditions and from different disciplines.  She has helped me decide how to approach various issues with my supervisor and develop the skills to be productive in a short amount of time.  I suspect I would have quit my PhD without her support.
   My second coping strategy is to find someone you can talk to who understands disability and academia.  Maybe your university has a specialist disability mentor but if not I would suggest approaching the staff disability network or staff equality office and asking if they can connect you up with a mentor.

3. Be clear and concise about adjustments

   Around 6 months after I got ill I asked to be referred to Occupational Health.  Many companies have an Occupational Health group who are responsible for everything from Display Screen Equipment assessments (i.e. making sure you are sitting properly at your desk) to ensuring staff travelling abroad get the right immunisations.  They will usually have a specialist GP whose job it is to report on the reasonable adjustments needed by staff in order to carry out their job.  Having a report from Occupational Health sent directly to my supervisor made it clear to him what I needed from the Department.
   My third coping strategy is to learn to be clear and concise about your needs.  You don’t need to disclose the exact nature of your disability every time, for example, that you book on to a course even though in my experience people will ask.  You are the expert on the adjustments you need not them so focus on politely stating your needs and don’t get drawn into justifying yourself.

4. Hold on to your support network

   This might seem like a glib thing to say as I understand that some people find personal relationships difficult at the best of times but it is important.  When I had to reduce my working hours because of my health it was tempting to cut out everything else so that I could focus all of the energy that I had on my studies.  In reality you don’t get a PhD without making some sacrifices so my social life is a fraction of what it used to be but I have kept weekends as my own with one day for rest and laundry and one day for socialising.  The friends worth holding on to have adapted to my need to go out for lunch rather than dinner.  They understand that I can’t walk far or stand around in the cold for ages and that I might need a lie down after travelling to their house.  This small amount of balance between getting enough work done to succeed and socialising in order to be a functioning human being has kept me going through the worse periods of illness knowing that when the latest infection passes there are people who will be pleased to see me on my terms.  It also helps to stop me from being impulsive when I’m feeling isolated and bored which generally leads to doing far too much and feeling far too ill to work for several days.  Skype and FaceTime are also a great way of connecting with family and friends when you don’t have the energy to leave the house.
   My final coping mechanism is to regularly make time for socialising, or whatever it is that you find makes you happy and helps you process your thoughts and feelings.

 About the Author

Hazel believes that academia should become more diverse and that the institutions funding research need to review how they support individuals with disabilities and chronic illnesses who have the skills to become great researchers but who need reasonable adjustments and flexibility to achieve that goal.  Hazel became part of Chronically Academic to raise the profile of this community with a view to campaigning for changes to the culture in academia and the funding opportunities available.