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Studying a Doctorate with a Disability or Chronic Illness – PhD Student Experiences

Are you considering studying a PhD, but worried about the impact of a disability or chronic illness on your research? If so, it’s important not to feel discouraged. Completing a doctorate whilst managing an existing condition can be challenging, but you won’t be the first to do so.

Here you can find advice from real students who have experienced PhD study with disability, learning difficulties or chronic illness. Reading about their experiences may help you anticipate some of the challenges you may face during your own PhD. – and get ready to successfully overcome them!

Hopefully the experiences recorded here will also help you realise that, whatever particular challenges you face during your PhD, you don’t have to do so alone. Helpful communities of past and present students are out there and a range of advice is available.


Please note: in order to protect the privacy of participants, some details concerning names and subject areas below may have been anonymised.


Jamie – PhD with dyspraxia and anxiety

Condition

Dyspraxia (a condition affecting motor coordination and sometimes affecting speech) as well as self-diagnosed anxiety difficulties.

What challenges have you faced as a PhD student with your condition?

I have experienced many challenges as a result of my difficulties. I struggled throughout school and was very uncertain at the beginning of my PhD whether it was ‘for me’ and I’d be able to cope with the workload.

The first year in particular I found very tough, as I constantly felt like I didn’t know what to do (throughout my undergraduate and master’s courses there had been a lot of structure, with taught classes and set deadlines for classwork, which suited me). I also worried that everyone else in the department was more intelligent than me. I struggled with the practical elements of the programme and worried constantly that I wasn’t making enough progress.

It didn’t help that I started the PhD at an odd time, in January, when most of my fellow PhD students had already begun to settle down and make friends, which left me feeling very socially isolated. I was also self-funded for the beginning on the programme, although later gained funding, meaning that I had to try to combine a full time PhD with part time work and I was very concerned about not having enough money.

Once my funding came through I was able to give up my other work commitments, which left me more time to focus on the PhD. Even though I’m quite a shy person and hate busy places, I pushed myself to talk at conferences, and was surprised to find that I really enjoyed it and am actually quite good at presentations. I have also now had two journal articles published, which is a major achievement for me; I can’t describe how happy I was when I saw my name by my first paper online. I am now in the final write up stages of the PhD.

I still have my bad days (doesn’t everyone?) and sometimes feel intellectually inferior as I think I have a while to go and so much to do before I finish. I also worry that it will never get done, but generally enjoy the excitement and challenge that the PhD brings. Getting to travel to nice places to conferences, publish papers in international journals and know that I am making a significant contribution to a research area which fascinates me makes up for all the bad times.

What’s helped you complete your PhD whilst managing your condition?

Things that have helped me include: trying to stick to a routine as much as possible, ‘breaking’ tasks down into smaller chunks (it sounds – and is! – a massive thing to try to write a thesis, so to make this less daunting I try to focus on smaller tasks, like writing chapter by chapter, or writing the introduction to a chapter if this is too big a task), writing ‘to do’ lists and ticking these off when done to help me meet my targets and setting myself realistic but challenging targets.

Although I sometimes feel guilty when I’m not working, it’s good to take little breaks when I can. I usually try to get some fresh air around lunchtime and this can help get me thinking some more about my PhD ideas. I also try to get adequate rest and sleep, although in practice this is sometimes difficult when I have a lot of work on.

Although I feel I’ve suffered as a result of my difficulties, there are also times when I think that my problems can have a positive influence on my studies; as I don’t enjoy social activities such as clubbing and shopping, this gives me more time to focus on my writing, as I am good at picking up on small details, this helps me spot errors and glitches that other people tend to miss and look at things from a slightly different angle. Also, as I have experienced difficulties myself I think I have more empathy when teaching undergraduate students.

For the first eighteen months I constantly felt like just giving up. However, as time went on, I was able to ‘settle in’ a bit more, and work out a structured work routine that suited me.

What support have you found available during your PhD?

In terms of support, I don’t disclose my difficulties to many people, although I went to see the disability service for both my MSc and PhD. They were quite helpful in terms of exam arrangements for the master’s, in terms of the PhD, but I felt that there wasn’t really much they could do to help me as they seemed more orientated to people on taught courses.

I also disclosed some of my problems to my supervisors, when I felt like I was struggling during the first year of my course, and had some counselling support. It was really daunting for me to see a counsellor as I’m a private person but having some time and space to talk through my difficulties with someone who was understanding and not involved in my life in any other way really helped me.

What advice would you give to other students approaching PhD study with a disability, learning difficulty or illness?

I’m probably not the best person to give advice, as I find it hard to be open about my difficulties. However, try to take a few breaks if you can, that’s really important. Even just a ten-minute walk or something if you have a lot on. You won’t miss a lot in ten minutes, and it might refresh your mind and help concentration in the long run.

If you get bogged down with everything you have to do, set yourself little goals and reward yourself when you accomplish them. If you’re uncomfortable about disclosing your disability, maybe do so on a ‘need to know’ basis, even having just a few people who know and understand can have a positive impact on your mental health. Don’t be afraid to seek counselling if things get too bad for you to cope with alone (most universities have free services, at least for the short term).

Most importantly, learn to celebrate the successes that you achieve. Doing a PhD is a major achievement for anyone. It can be incredibly stressful, but also incredibly fulfilling.


Vivienne – PhD with cerebral vasculitis

Subject area

I'm Vivienne Dunstan. I completed a history PhD at Dundee University 2003-2010 (just under 6 years including a medical break in the middle), researching reading habits in Scotland circa 1750-1820. I've been an honorary research fellow there since, which helps me publish new research in book, cultural, social and urban histories in the 17th to 19th centuries.

I was a science PhD student before then, studying software engineering at St Andrews University, 1994-1996. But I had to leave that science PhD as the illness got too bad, as I'll explain. I then retrained, studying part-time, as a historian.

Condition

I have cerebral vasculitis, which is a 1 in a million incidence disease (literally!) causing inflammation in the blood vessels in my brain, and strokes as a result. Day to day the symptoms are similar to multiple sclerosis, which is the easiest way to explain it to people. Problems include severe fatigue, sleeping for up to 18 hours every day, difficulties with confusion, memory, speech, hearing, eyesight, mobility problems including using at least a stick if not my wheelchair, and inability to control my bladder properly. Oh and it makes it very hard for me to read print now. With my Kindle adjusted to large well spaced print I'm ok. With lengthy printed textbooks, not so good.

This disease struck as I was just 22, starting a science PhD. It was very hard to diagnose - there aren't definitive tests a lot of the time for it. Initially it looked like ME, but I was diagnosed properly 3 years later, and discovered that I had a progressive neurological disease. Incurable, but we can try to slow down the progression with aggressive permanent chemotherapy drugs and steroids.

What challenges have you faced as a PhD student with your condition?

Well I had to leave one PhD because of it. We didn't know exactly what was wrong with me then, but I was finding it harder and harder to put in the hours for a full-time funded PhD. I wanted to switch to part-time study, but the funding body EPSRC couldn’t support that. They said take a break, come back when you're better. I had a strong suspicion whatever was wrong with me wouldn't work that way. It didn't. In the end I had to walk away from the science PhD, which was very painful.

After retraining part-time as a historian, picking up bachelors and masters degrees, I had another go at a PhD. The biggest problem I had was putting in the hours. Towards the end of my nearly 6 years part-time I could do no more than 5 hours study total a week, in 1 hour chunks spread throughout the week. I'd be so brain tired after working for just an hour that it would often take me 2 days to recover before I could do any more on my PhD. But I kept going. And I finished. My first supervisor said that he was always impressed by what I did in very little time. I had to work that way. No messing about, no procrastination. It was get on with it, or don't finish a second PhD. I couldn't bear that thought.

As a history student it's normal to spend extended hours - months / years! - in an archive, working through old documents to find evidence and primary sources. I couldn't do that, especially as the disease was worsening over time. I didn't have the stamina to travel to an archive and work there for long periods. Even working in my local university archive wasn't practical. So, instead, I would bring the records to me. I got a lot of photocopies, I arranged microfilms, and my husband digitally photographed old records. This meant I could work on transcribing and analysing these records at home, in my limited good patches. In pyjamas! And then go straight back to bed and rest.

What support have you found available during your PhD?

In the science PhD that I left my supervisor was very supportive, but rather helpless in the options available to him. My funding council weren’t flexible enough in their policies to help me complete and back then there was little support at my university - though I gather things are better now.

In my history PhD things were much better. Best of all was the support I got from my two supervisors - both main supervisors, the second one taking over after my original supervisor left Dundee to move to Oxford. They didn't need to understand my medical situation, which is rare and complex. All they needed to know was how it affected my study, and what they could do to help. I don't think I could have had better supervisors and support for this second PhD.

I also got help from disability support services at Dundee. Much of this was really just about setting up formal support, if I needed. For example by the end of my PhD any meeting over an hour was impractical: I'd get very tired, slurred speech, confused, and would need to lie down fast! Disability support arranged for my final viva to be restricted to an hour for disability reasons. And they also helped to arrange for it to be in a wheelchair accessible venue, with a nearby toilet if I needed that urgently. Normally the viva would have been on the 4th floor of Dundee's Tower Extension building - the main history location - which is lovely, but has a tight lift, and I'd have to take the lift down to the ground floor to get to the toilets, then back again up to the viva venue. Instead, my viva was held in the basement archives area, which is much more accessible and was much more appropriate for me.

The AHRC, who funded my second PhD, were also very supportive. They permitted me to take a 5 month break for medical reasons, when I was really struggling to cope with what I was trying to do, and needed a break to recharge my batteries and get through to the end. Thank you to them very much. And of course thank you to them for funding me part-time.

I also found Dundee's university chaplain really helpful to talk to when I was going through a very difficult life and death situation. I'm agnostic, so talking to the chaplain may not seem an obvious approach. I said to her I wasn't there for religious reasons, but she respected that, listened, and supported. And because she had a PhD herself she understood what I was going through with that, as well as being able to offer support with life and death issues. I got more help from her than from the university's counselling service, who seemed to struggle to grasp how serious my situation was.

What advice would you give to other students approaching PhD study with a disability, learning difficulty or illness?

Firstly declare your disability formally with the university authorities. Whether it's physical or mental health, or a mix of the two, don't try to cover it up and cope on your own. You'll probably hit a crisis, and if you've declared it properly - including registering with the university's disability services - you are in a better place to get the help you need. Declaring the illness or disability will also make it easier to arrange a medical break if you need to, and have special circumstances taken into account.

Also be honest with your supervisors about how you are doing. They are there to help you, and they can't help you if you're covering things up.

Finally, be realistic about what you can do. Don't plan based on just your best patches, or how perhaps you were before you fell ill. Make a realistic plan, and work towards completing that way. And adjust your studying style as need be if things change for you along the way. All so you can complete.

And good luck!

Dr. Vivienne Dunstan is an honorary research fellow at Dundee University. You can read more about her experience with cerebral vasculitis at the website of Vasculitis UK and in a specific blog about completing her PhD with the condition. Vivienne also blogs about her research in history and related matters on her personal website.

Additional advice on completing a doctorate with a disability or illness

If you’d like to speak to other students about your experiences or concerns, why not try the helpful community on our postgraduate forum?

You can also read our general guide to studying a PhD with a disability or chronic illness or learn about your legal rights and the availability of disabled students’ allowances.


FindAPhD is very grateful to all students who’ve shared their experiences and advice here. If you’d like to contribute to this page with your own experiences of studying a PhD with a disability, chronic illness or learning difficulty, please get in touch.

Last updated - 15/02/2016

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