We need to talk about disability and chronic illness during the PhD

This post is by a Phd student who would prefer to remain anonymous.

As we go through life (and for many of us, go through a PhD), we naturally accumulate adversities. When a new hardship rolls around I tend to respond in three steps:

  • Step 1: Grieve. All seven stages.
  • Step 2: Find a community of people also afflicted by my hardship, whether online or off.
  • Step 3: Rebuild my life around this hardship with the support of those found at step 2.

So when I developed a chronic illness and associated disability in the second year of my PhD the thought of resources, support and others out there who might share some of my experiences was comforting.

When I went looking, I was surprised to find something of a void. First, I scoured my University’s website. A disability counselling service is available (and is helpful) but is not specific to higher degree research. The Graduate Research School makes no mention of disability on their website, but maybe other Universities do better?

PhD support blogs such as the Thesis Whisperer, PhD Life, and Get a Life PhD are silent on the topic (you are right about this – sorry – Editor). I couldn’t find much of a hashtag community on Twitter either. Broader communities do exist, such as #phdchat (for PhD students) and #spooniechat (for people with chronic illness), but very little to combine the two.

There are a few wonderful blogs (for example: PhDisabled is a space for disabled students to share their experiences), but many are dormant and most are concentrated in the UK and US. Besides, why should a discussion of the added struggles of disability and/or chronic illness be limited to specialty blogs?

That disability has not reached the mainstream of diversity discussion in academia is surprising, though could be attributable to a lack of data. Although we know that around 1 in 5 people in Australia have a disability, little is known about the numbers in academia.  Gauging this is particularly difficult because many people choose not to disclose their conditions. We do know that people with disabilities are under-represented in tertiary education and that they report high rates of dropout. Nonetheless, significant numbers still exist and there is no reason to believe that this does not extend into higher degree research and beyond.

Why does it matter?

There is no denying the double-layered ‘Valley of Shit’ that the combination of chronic illness and a PhD provides: it is irrefutably awful. Whether the illness brings pain, depression, fatigue, anxiety, decreased mobility, stigma, endless appointments or some glorious combination of these, it makes an already difficult journey more difficult. It might make it hard to concentrate, to conduct field work, to go to workshops or conferences, to attempt networking, or to do any other essential requirement of a PhD. Due dates get missed, supervisors get cranky. And of course there is the constant concern about being ‘outed’ to colleagues and potential future employers. Recruitment discrimination against people with disabilities is real

On the other hand, academia can provide an excellent work environment for people who are unwell. Arrangements can be flexible and work can be delivered from bed or wherever is most comfortable. Disability advisors, while not specialised, are invaluable and not available in many other industries. And, most importantly, there is the particularly nuanced and invaluable perspectives that disabled and chronically ill people can bring to their departments and to their fields. These mutual benefits can be achieved but only with support, most importantly a supervisor who is able (better yet: trained!) to provide some flexibility for unwell students.

Where to turn?

I recently tweeted out asking for other disabled PhDs to contact me and was overwhelmed by the response. Obviously we are out there, and probably many people have a better established support network for this than I do. But what if they don’t? What if we all just need support through on a solo journey, with no acknowledgement of the extra-phenomenal nature of our achievements?

My efforts eventually led me to find Chronically Academic (CA), a small but growing network of academics with chronic illness. CA share my goal to raise the profile of academics with a chronic illness and/or disability and create a network from which members can access peer support. They have a blog, a Twitter page, a Facebook page and a private Facebook group, and while this group is not specific to Australia their member presence here is growing. You can join the Chronically Academic network here.

At the very least, establishing richer networks might help PhD students with chronic illness and/or disability feel less isolated. At best, maybe we can encourage the non-disabled academic community to notice, support or even value us. I think we deserve that.

I’d like to thank our anonymous poster for such a useful post – I hope it’s a strarting point for someone who might be seeking help. Now I am wondering how many of you have experience with chronic illness? What do you think academia can do to better support you, or people you know who are suffering?

Related posts

Phd Stress

Why do people quit the PhD?

20 thoughts on “We need to talk about disability and chronic illness during the PhD

  1. As a person who has a friend and fellow PhD student with a chronic, congenital locomotion issue, I can see how hard this is. She had to wait a long time until her lab managed to get the conditions for her to work, and I assume a lot of supervisors are not willing to take the plunge to accomodate the needs of people with disabilities. I hope the poster is finding more and more people to relate to withing his/her community. Even mental disease that is now much more talked about can be a chronic problem aggravated by grad school. Thank you for bringing this to light and I wish you all the best 🙂

  2. Thank you for this post. As someone who experienced a haemorrhaging stroke the year prior to commencing my phd, I absolutely resonate with everything the writer has said. However I’ve found a lack of understanding from supervisors through to inflexible expectations when I’m utterly exhausted. I’ve not been offered any extra assistance, been ignored for sessional teaching opportunities and left to feel like I’m invisible. I’m at the point now (I’m half way through my phD), where I’m contemplating leaving or hurrying up and finishing it early to get the hell out of the University. To be honest I feel the phd experience has dragged my confidence and self esteem down compared to before I commenced the degree.

  3. I have a chronic and permanent disability where standing for extended periods (>5 mins) is excruciating. Part of my job as a post doc is presenting talks and standing by posters and networking at conferences. I ring in advance to arrange a chair but invariably when I arrive there is no chair and the podium doesn’t accomodate sitting down. It’s a major problem I am yet to resolve and does impact my ability to network and promote my work. There are also always endless queues at conferences. Having an invisible disability is an added issue as people assume I’m being lazy by not being by my poster or by sitting down. Thanks for sharing this. Would love to find a network of others in a similar position to share strategies and experiences.

  4. Is your group also open to people who are professional staff within a university, but are also afflicted with a chronic illness?

  5. I can totally relate – thank you for this posting. Just to share an experience. While sitting on a bed in a chemo ward I reflected upon the original Glaser & Strauss grounded theory & it gave me a much deeper understanding of their research context.

  6. Absolutely they can do better! I have struggled with depression and anxiety, which was exacerbated by doing a PhD and having a relationship breakdown, and subsequently asking what is the point of all this. I’m no expert, but the problem to me seems to start by living in a capitalist/corporatist climate in a society that has little emotional intelligence – subtle but pervasive – everything is about meritocracy, individualism, perfectionism to name a few. These sentiments filter down to the people and the little guys, before you know it, it is less about science and knowledge and learning and inclusion and all about measuring everything in some form of judgement, good or bad. Whilst I struggle to reconcile what is my responsibility and that of the institution, i know that funding is a big issue and probably won’t change anytime soon. My school only just appointed a contact person for RHD students! You can meet them is very limited time slots every months. There was literally no one I could go to to get support or advice if I was struggling (I did try and got sent a weblink to student services, some generic response, and delayed might I add). In most jobs (and I refer to it as a job because they expect you to act like an autonomous colleague and not a student) you would be on stress leave, but in academia, it is just accepted. With all the articles about mental health in academia, you just start to feel hopeless or jaded (I myself feel jaded). Out of interest and a sense of unfinished business as I come to the end of my PhD, I can’t stop thinking and planning how support for RHD students could be improved – a pipe dream that likely will not get funded either. There has to be a better way.

  7. I was first diagnosed as having a disability when I was 6 months old. My first school accepted me into grade 1 at age 3 because it was a primary school only; when I went to a mainstream high school, they expected me to fail for a few years then *hopefully* to graduate at the same age as all the other students. They didn’t expect me to go further than year 10.

    I’ve moved around a lot and experienced barriers, including being told at one university that ‘I will prevent disability access because you’ve asked too many times’. Needless to say, that impressed the appeal committee and the Australian Human Rights Commission. In the end, that university provided disability access and allowed me to complete my degree. Now I’ve moved (again) and I’m researching at UniCanberra with a supportive cohort of PhD and post-doc people but those with disabilities tend to be fairly quiet about it. Except me, but I use a mobility cane and I’m researching representations of my disability so there’s no staying in the closet now.

    I’ve never had the kind of support network you’re talking about. I guess the idea never really occurred to me that it was possible because I’m used to being isolated as a disabled person. I’m in a few facebook groups for people and families of people with albinism (the cause of my vision impairment) but none to do with higher education. My support network has grown from attending Shut Up And Write with other researchers, which is fantastic but, as the author says, it’s not disability related.

    Recently I contacted Ben Whitburn, another vision impaired researcher, whose research is relevant to my thesis (I’m researching representations of albinism in speculative fiction). I found reading an ‘own voices’ researcher was like a drink of fresh water, so I asked him if he knew of others. He put me in touch with a ‘vision impaired’ research group to which he belongs. This is a combination of people doing research into vision impairment and researchers with vision impairment. I will attend my first meeting — an electronic meeting, yay for living in the future — this Friday.

    I wonder how many other groups like this are available but not highly publicised. I also wonder if there’s a need to create more. I applaud people who have set up the chronic illness and disease support groups but I don’t have a chronic illness or disease, nor have I really lost anything: I’ve lived this way my whole life. My only ‘loss’ is ‘missing out’ and aging making things more difficult (everyone else gets reading glasses when they’re in their 40s; what happens when your eyesight was crap to start with? 😀 ) Illness and disease experience isn’t nearly as relevant to me as a group of people with disabilities, even if their disabilities are different. In 2007 I attended Reins, Rope and Red Tape, a disability arts advocacy program by people with disabilities for people with disabilities run by Arts Access South Australia before the government de-funded it. I wonder if we need more programs like that, even if there is no funding — perhaps we need to seize the moment and do it ourselves.

    Are there any others out there with suggestions?

  8. I am an Autistic PhD student with chronic depression and anxiety. I’m somewhat lucky in that my research is in the field of autism, so my supervisors are experts in that field and are fairly understanding of how being Autistic changes my PhD experience.
    However… I’m currently in the final stages of my PhD and have just spent a number of weeks in a psych ward due to my mental illnesses. My supervisors were lovely while I was in the hospital, but I was surprised to find that as soon as I returned to university there was an immediate expectation of “business as usual”, and a real reluctance to discuss my experience and how it might impact on my PhD progress going forward. I suspect that if I had spent weeks in hospital with an exacerbation of a chronic physical health condition, I would have been provided opportunities to slowly transition back to a full workload. It’s disappointing to discover that the stigma against mental illness extends into academia – especially given that my supervisors are mental health professionals.

  9. I had/have (depends who you talk to) a semi chronic illness, but my late original PhD supervisor was disabled and used scooters to get around, as well as spending extended stints in hospital. I saw how HE struggled to get the University to make provisions, so I cant imagine how hard PhD students have it.

  10. What a relief to read this. I had to give up my PhD after a stroke but was fortunate that I’d gained tenure a few years earlier so remained employed as an academic. It never ceases to amaze me that as teachers we are expected to give the utmost support to students in situations of chronic illness and disability (and, rightly, many other situations) but there is little concern for the wellbeing of staff with ever-increasing workloads and demands. These would be hard enough to deal with for a healthy individual let alone someone like myself who has several chronic illnesses and suffers PTSD, anxiety and depression. Every day it is a pleasure and privilege to foster learning in my students and support those who may need assistance to get through. I wish our universities would look after its staff the same way. I think a similar network like this UK one for Australia would be great.

  11. As someone with chronic illness when doing my PhD, the flexibility of time was crucially important. My supervisors were really aware and supportive with that. My uni also had awareness and support for disability students. Though I was not on campus, it seemed quite supportive. I probably didn’t take advantage of it too much, mostly because I was a distant student.
    I did have a timeframe within which I had to complete the PhD overall, but within that, the flexibility was essential. This was a really great post to read, so thanks “Anonymous”. I am going to look into the Chronically Academic site too. That could have been great for me when I was doing my PhD. But still relevant!

  12. (I’m cross-posting this from the Facebook discussion of this post.)

    I’ll be going into postgrad study already knowing how to manage my chronic disability – and given the (unavoidable) circumstances, I really believe that puts me in a very fortunate position. It’s not going to come at me out of nowhere, and I don’t need to spend valuable time learning how to cope with both illness and phd.

    That said, I also treat the ‘maintenance’ of my illness as a part-time job (it takes up a part of my day, every day, some days that’s more than others but it’s always there), and I know I won’t be able to add a full-time study (or, when it comes to it, employment) load on top of that.

    Given the culture of insane working hours demanded by academia, it makes those of us who physically and mentally cannot give it our complete time and attention look like we’re the ‘dole-bludgers’ of the academic space.

  13. Thanks for your thoughtful article – the PhD Owls Facebook page often includes stuff about PhDs and disabilities or illness. While some are associated with our older Age Profile, members can be quite young and face the kinds of issues that come up for us OWLs. You and anyone else should feel free to join our international community on Facebook. Here is a link:https://www.facebook.com/groups/708019069302386/?ref=br_rs

  14. This was a great and thoughtful and thought-provoking post. I don’t want to tell my supervisors about my chronic illness in case of the prejudices mentioned, and as I’ve had to shift to part-time to do my PhD and have already had one leave of absence, I worry that it would just be seen as an ‘excuse’. However, disability and chronic illness aren’t necessarily the same (although greater awareness and accommodations at grad (and undergrad) level would probably help both). The problem I face is that my chronic illness is very real, but it is effectively ‘invisible’ as I don’t have the wheelchair or cane that would flag me up so there is zero support in my case at my university and no advocacy group I can turn to. My condition is very rare too, which makes it even more difficult. I’m not denying the very real challenges that the disabled still face; I’m just wondering if we should question further to see if there are separate and distinct needs, rather than lumping the disabled and chronically ill together?

    • One distinction springs to mind – whether the person has had time to adjust or whether the chronic illness has been diagnosed or the disability acquired during the PhD – so maybe that is a useful distinction.

  15. I really appreciated this post—we need to talk more about the ups and downs of working on a higher degree by research while balancing the demands of other Life Stuff, including experiences of chronic illness.

    I embarked on my PhD following a year in which I was hospitalised four times for major depression and underwent 15+ applications of ECT; I also have Crohn’s disease and arthritis.

    The PhD gave my life some much-needed structure, purpose, and momentum, and I truly appreciated the flexibility: I could work anywhere, at any time, as long as I had my laptop and an Internet connection. I also got to meet other individuals with a history of depression through my survey and interview research.

    At the same time, however, I felt acutely self-conscious about what I was and wasn’t able to do—physically and emotionally. I struggled often with memory and concentration, sitting at my desk for hours and hours just trying to think of the right word to complete one sentence. As a writer, I often felt overwhelmed by feelings of inadequacy when my output slowed down and I couldn’t easily express myself.

    The pressure to research, write, AND teach was also phenomenal. I never wanted to say ‘no’ to anything and risk being seen as lazy, incompetent, or unreliable. I worked hard but was not able to publish during my candidature (which, as we all here know too well, poses a significant threat to a student’s post-completion employability).

    I hope that more and more academics and rookie researchers contribute to conversations like these. The most reassuring thing is to realise that you’re definitely not alone.

    Cheers

    A

  16. Thank you for shining a light on chronic issues. I have a ‘hidden disability’ and was so relieved when the majority of my faculty responded with respect and duty (no sniff of stigma) to my letting them know I was registered with the university’s Disability Liaison Unit.

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  18. Dear Thesis Whisperer,

    My experience of having a chronic condition (I hate the words illness or disease – I have a condition, I’m not ill) in academia has been extremely positive. I found it worked to be open – get the whole thing out into the open and trust my colleagues to respond within the University guidelines.

    When I was in write-up with my PhD I found it impossibly difficult. I had been told that it could feel like wading through mud, but this felt like I was wearing concrete boots to do the wading in. Another thing altogether – impaired walking – took me to my doctor, who diagnosed Parkinson’s. The moment I was given the appropriate drugs my mind began to clear – it was like the fog started to lift.

    My viva was coming up, and when I went back to look at my already submitted thesis I found 4 double-sided pages of errors – mostly formatting – which the cognitive fog had obscured. The thought of surviving a Viva of up to 4 or 5 hours, newly on the drugs, with unpredictable reactions (vomiting, brain freeze, extreme fatigue among others) was daunting. So (reluctantly) I notified my Director of Studies and the University disability department (University of East London, UK).

    They were amazing. They told the external and internal examiners what the situation was, and with them agreed that my Viva should be limited to two and a half hours. They also sent me their main questions beforehand.

    The Viva was tough, and the intellectual side of the process wasn’t in any way soft-pedaled. But knowing that everything was out in the open, that if I needed a break I could have it, and that my brain fog wasn’t me, it was the condition, made it possible.

    My colleagues from my 2012 diagnosis to now have been amazing, bearing with me on the (now very few) days when the brain fog creeps back in, and learning to ignore me struggling with zips and sleeves and backpacks unless I specifically ask for help. And I am learning to be realistic about what I can and cannot take on. And to remind myself that I am not my condition, I am me.

    [Here’s a link to a paper I co-authored recently for the Journal of Regenerative Medicine about living a full life with a condition – it may be useful.] https://www.ncbi.nlm.nih.gov/pubmed/29095098

    On 27 February 2018 at 17:01, The Thesis Whisperer wrote:

    > Thesis Whisperer posted: “This post is by a Phd student who would prefer > to remain anonymous. As we go through life (and for many of us, go through > a PhD), we naturally accumulate adversities. When a new hardship rolls > around I tend to respond in three steps: Step 1: Griev” >

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