An Unreliable Mind: Being OCD in the Academy

Written by Clare Griffin 

I am writing the first draft of this on a flight home, feeling emotional after a crappy connection. Is it a good idea to start writing this now? Is it a good idea to write it at all? To publish it, where anyone could read it? What do I hope to achieve by this? How much will it hurt me to publish it? How much good could it possibly do? For me, or for anyone else? Do I mean everything I am saying? And will anyone believe it?

This, and a thousand other worries come to me on bad days, when the OCD I was diagnosed with a few years ago takes over. At some points in my life, all I had were bad days. Now, I have a lot of good days, and still some bad days, and the bad is manageably bad.

After much treatment, and much help, life is easier. Easier is not the same as easy. But some days, easier is everything.

My OCD rewrites the world for me. It pushes me into false certainties where only uncertainties lie. If a friend doesn’t reply to me, they must certainly hate me; yet I can only be uncertain as to the motivations of others. My mind can be unreliable, yet my work, my career, my life, rely on my mind and on my judgement. How can an unreliable mind be an academic mind? If I can’t always trust my judgement, how can anyone else?

My OCD gets me praise. If I have scrutinised every detail of a piece of work or of an event, my OCD will still have me check again, and again, and again, and again. I am early for deadlines, always there for meetings and the most reliable collaborator – until I’m not. Until the compulsion that drives me to check, and recheck, and check again, pushes my brain too far, and I have to lie in the dark to try to make it stop. How can I feel well in an Academy where other people look at pain and see productivity, see the shadow on the wall cast by a pathology and declare it a work ethic? How can I function here? How can I function anywhere?

And yet I know for certain - with actual certainty, not the false kind the OCD sends - that people with mental health and neurological problems are valuable, intelligent people. I know for certain that academics with these conditions make major contributions. I know for certain that those people who have been open about their conditions, and their problems, have helped me. Cartoonists, writers, presenters, literary studies scholars, and historians have all made important and beautiful works out of their pain. If I can unquestioningly accept the value of the intellectual work of other people - other creators and academics with problems like mine - can I accept the value of my own mind? Can I believe that other people will?

Why did I decide to write this? Is it to free myself from the prison of shame that keeping medical conditions private can create? Is it to find sympathy? To aggrandise myself or pity myself, or hurt myself? To martyr myself? Will I cause myself too much pain with the vain and self-important idea that I will help others by writing this? Will people react negatively to this? Or will they not even notice it? Have I disclosed enough to help people? Or have I exposed myself by sharing far too much? The reality I must live with is - I just don’t know.

About the Author

Clare Griffin is a historian of early modern science

Portrait photo of Clare who is 
dressed smartly and facing the camera 
in front of a plain background.

and assistant professor at Nazarbayev University, Republic of Kazakhstan. Her work focuses on global exchanges, practical knowledge, and translation, especially as this relates to the early modern Russian Empire.

Gratitude

Written by Ella Hollis 

Ella kindly gave us permission to share this post from her personal blog.

I think that going through any kind of hardship, no matter of what nature, can sometimes mask what you do have in life to be grateful for.

Ella, a young white woman with
long blonde hair, is dressed
formally in a black academic
gown. She is standing on a lawn
facing the camera and smiling.

It’s so easy for me, and only natural, to focus on what I’ve lost. Compared to only 4 or 5 years ago, I’ve had my world totally stripped of life as I knew it. My total life plan was scrapped, I have had to intermit from university, I no longer have any independence, I have to use a wheelchair and rely on carers to do the simplest of tasks I never imagined, at my age, not being able to do. My life went from having a successful academic career to spending extended periods of time in hospital, with my body failing me more and more. My daily routine was suddenly out of my control, and my life was dictated by my body.

This week in particular, I’ve been really struggling. I don’t really know why; as always, there has been a lot going on, but I just haven’t been able to see a way forwards. I can’t help but apologise for basically my existence and the smallest of tasks seems massively overwhelming. I just haven’t been able to get myself out of this frame of mind and I’ve spent so much time in tears.

Ella is in her home cuddled
up to her dog Jeffrey. They
both face the camera and Ella
is wearing a nasojejunal tube.

How did I get here? 23 years of age, I can’t even eat a meal, I’m fed through a tube in my nose, I have a stoma bag, I’m in a wheelchair, my health conditions have been taking over my life and I don’t know how much more I can take.

However, although I’ve found it even harder than usual to see clearly, I need to try to focus on what I do have and what I am truly grateful for. Please don’t think that this comes easily, because I can assure you it doesn’t, and whatever positive front I may seem to put on here isn’t how I feel most of the time.

Firstly, there’re things to be grateful for because of my illness. This sounds

Ella is pictured in a cafe with a
friend. Both young women are
in wheelchairs and smiling
directly at the camera.

crazy, I know, but without it I wouldn’t have met some of my closest friends who share some of the same conditions as me. I’ve lost most of my older friends because of being unwell, but the friends I’ve met through my blog or other forums understand me like no one else and the bond I have with them is something I’m so grateful for. There’re people whom I can talk about things I never imagined myself having to discuss at my age, but people who have an understanding of at least some aspects of what I’m going through.

As well as this, my illnesses have truly changed my perspective on life. It has shown me the most important things which, to me, is my family – I have the most supportive parents, sister and boyfriend, as well as Jeffrey who brings me more joy than anybody realises. Being unwell has also made me grateful for the smallest things I never realised I took for granted; getting fresh air after eight weeks in hospital, sleeping in my own bed and having a nights sleep without being sick.

Ella is looking down at her
dog Jeffrey who is sitting in
her lap. She is pictured outside
a building in her wheelchair.

When I really thought about it, I also have a lot more to be grateful for – good days where my pain and other symptoms are manageable and I’m able to get out the house and enjoy myself, even if it’s just taking Jeffrey to the woods. Getting a surprise, receiving a nice message or comment on a blog post or getting a letter from one of my pen pals; honestly the smallest things now just mean the world to me as I understand the importance of kindness more deeply.

As difficult as life is at the moment, and as much as I’m struggling both physically and mentally, all I can say is that the love and support from my family and friends, messages, visits, and any act of kindness, no matter how big or small, is appreciated more than I can put into words. No matter how challenging life gets, there is always something to be grateful for.

About the Author

Ella, who is 23, was studying Natural Sciences at Cambridge University but unfortunately had to intermit from uni for the last three years due to ill health. She suffers from EDS, PoTS, Gastroparesis and associated conditions as well as Crohn’s Disease. She writes a blog to connect with others in similar positions with the hope to support them, as well as document her journey.

Designing a Disabled and Ill Researchers’ Network

Written by Kay Guccione (Researcher Mentoring Consultant) and founder members of the University of Sheffield Disabled & Ill Researchers’ Network: Chris Donaldson (PGR in the Medical School), Peter Dory (PGR in English), and Isobel Williams (post-doc in Psychology).

Image of the Disabled & Ill
Researchers' Network logo which
is a blue square with the name
of the network and a plus sign on
a black circular background.

Nobody embarks on a PhD thinking it’s going to be easy, but disability and illness can make researching a thesis that little bit more daunting, exhausting or isolating. The Disabled & Ill Researchers’ Network is a group for postgraduate and postdoctoral researchers who are managing PhD study alongside a disability, impairment, injury, or physical, psychological, and/or mental health condition.

"The biggest issue I face in my research is fatigue management. It's never easy to judge what might send me into a long, unproductive slump. I'm lucky enough to have understanding supervisors, but there's always the worry that I might slip too far behind."

The Network launched at the University of Sheffield in March 2018. It’s one of three new peer-networks for researchers at Sheffield (see also: the Emotionally Demanding Research Network and the Parent PGR Network). These new researcher communities are a part of our Researcher Wellbeing strategy, combining lots of initiatives that work across different researcher groups.

At Sheffield we use a 'Google Community' website but you could make use of any online space that works for you. A Facebook group, a Wordpress site, an email mailing list, a Slack channel or any other intranet or messaging system you prefer. Through our online space, and face to face events, the group aims to provide a forum to discuss problems, share strategies, and campaign for greater awareness of researcher disability and illness and its impact on study.

“I had perhaps naively expected all members of staff at a university to be ‘disability aware’ – particularly those who work in patient-facing departments and therefore work with disability and illness for a living. That was not the case, and I came across some ignorant-bordering-on-discriminatory attitudes. I was, however, lucky to have understanding supervisors and PGR leads who allowed me to work in the way that was right for me, and fought my corner when necessary.”

In our first meeting we started with an open forum to surface some of the big discussions, we compared experiences, how they matched with the expectations for study, and the university processes and systems that support this, or make life more difficult.

Hot topics ranged from the very cultural, to the very practical:

• Patchy awareness in departments of the needs of disabled and ill researchers to manage their own time and energy — this can lead to overstepped boundaries. e.g. treating disabled researchers as if they are ‘lazy’ if they decline opportunities or say no to them, or using power relationships to force participation, or insist on longer working hours.
• Awareness of how physical health can impact on mental health. If a disclosed disability is ‘physical’ then a PhD researcher may find themselves are excluded from support for mental health.
• Low awareness of key contacts who can support Disabled & Ill Researchers’: e.g. Departmental Disability Liaison Officers.
• Application for support and communication processes can vary between different services, academic departments, health services, and key contacts meaning that they can take a long time and errors can be made, or information lost.
• The number of Accessible workspaces on campus is not adequate or well mapped.
• Taking a Leave of Absence (suspending PhD study for a period of time) — which is particularly pertinent to ill and disabled researchers:
• Financial exclusion from taking a Leave of Absence due to it being an unfunded period of leave.
• How to best organise and manage a phased return from a Leave of Absence
• Supervisor(s) awareness of Leave of Absence processes, and their permission or encouragement to use the process.
• The ‘current climate’ of research (deadlines, submission times, pressure) and the difficulty of taking time out.
• A Leave of Absence isn’t a ‘cure’ and we shouldn’t expect that researchers will return ‘fixed’ and without ongoing issues to manage.

"I think my biggest issue has been adapting the skills I've learnt to a research environment - particularly for students with disabilities and SpLDs, I don't think your degree prepares you for how to manage your time, how to balance your different responsibilities. I've also struggled with a great deal of people not understanding how my disabilities/SpLDs affect my learning and how I carry out my PhD. Finally, when I've needed time away, I don't feel as if I've been able to take it - I simply wouldn't be able to afford to live, as you lose funding for time you take on leave of absence."

To make sure that the fledgling network would grow and have strategic impact, the group decided that our immediate priorities were to develop:

• An online space where we can all share information, resources, ask questions and support each other;
• Partnerships to influence strategic processes and policies related to research staff and students and ensure representation;
• A series of blogs sharing the stories and experiences of disabled and ill researchers (here’s the link to the growing series) that can be put to good use at researcher inductions and pre-recruitment;
• A guide for PhD study with a Disability or Illness, my excellent colleague Chris Donaldson has joined me to co-author this study guide;
• A campaign related to academic and professional services staff disability awareness training;
• A disability/illness disclosure pledge campaign — encouraging postgraduate researchers to disclose disabilities and illnesses and have open conversations with their supervisors about the best way to manage their health and study.

"Ideally, I'd like to see the initial disclosure be the beginning and end of all bureaucracy surrounding disability and illness for PGR students (well, all students really) - no having to worry about justifying extra provisions or leaves of absence, piling stress onto an already stressful undertaking.”

“The big change I want to see implemented is paid sick leave for PGRs from all funders. It's not always possible to financially support yourself when you're unwell, especially if you're a student from a lower socioeconomic background.”

“The fact that I feel ‘lucky’ to have the support I did, says something about the current state of disability awareness in higher education. Everyone should have the support I did. I think we can get closer to that by training staff around how they should be supporting disabled students. We should also be fostering a culture where students feel they can have open conversations around disability and reasonable adjustments, trusting that the outcomes of those conversations will be routinely actioned by the university.”

We believe that networks, led by researchers, and that respond to the real needs of researchers are the most important way to support self-management, peer-learning and healthy relationships with work and study. These networks must have resources though if they are to create change and build user-centred processes, including support staff time, and senior staff champions who will listen and amplify their voice.

About the Author

This image is a portrait photo
of Kay Guccione with
various framed artworks
in the background.

Dr Kay Guccione is a Researcher Developer, with specific interests in the role of mentoring and supervision relationships in enabling doctoral learning. She has recently published two funded pieces of research into Trust Building in the research environment, an empirical study looking at the Value of the Doctorate, and books on Enhancing Researcher Development, and on Thesis Writing. This year she was awarded a National Teaching Fellowship for leadership in doctoral and researcher education.

Working from Home: Issues and Advice

Written by Calum Carson 

Recent developments in communications technology and a greater recognition of the importance of a healthy work-life balance has led to a wider number of workers across the world voluntarily working from home. For those experiencing chronic illness and/or disability, however, such working arrangements are an unavoidable reality rather than a choice. For individuals in this position studying and working within a profession such as academia, where long periods of independent research and a lack of day to day working routine are already commonplace, there are a number of issues that can emerge through such experiences that it is important to discuss.

From my own perspective, the involuntarily imposition of home working arrangements is something that I have spent the past eighteen months coming to terms with, following the beginning of an on-going chronic back injury at the beginning of January 2017 (worst New Year’s gift EVER). This coincided with the beginning of the second year of my PhD following a six-month suspension for a research internship. I had spent the first year of my studies working 9-5 in the communal office space provided for doctoral researchers in my department, a routine I found easy to stick to after spending six years working 9-5 before returning to research for my Masters/PhD. My own particular injury essentially turned my back into what I liken to a cross between Goldilocks and an extremely moody teenager, with seating/standing/walking conditions etc. having to be “just right” in order for it not to tie itself into painful knots. This makes working from the rigid confines of a desk in an office extremely difficult, and has made developing a new working routine from home essential.

In a number of ways, the two key issues inherent in working from home are the same as those within any professional working environment: making sure routines and systems are in place so that you can work well and maintaining functioning professional relationships with colleagues to facilitate those routines and systems. The key difference for most home workers, however, is that the relationship aspect of work shifts from being comfortable with others to being comfortable with working alone and with yourself. This can be more difficult when home working has been imposed by an individual’s circumstances through a chronic illness or disability, rather than a specific choice deliberately made to better support family life and/or a work-life balance.

Given this, it is no surprise that a number of issues can manifest for someone finding themselves in this position. Feelings of loneliness and frustration about one’s circumstances are perhaps the most obvious, with the necessity of working from home making some depressed and anxious about missing out on working with academic colleagues. For some like myself it can also have a detrimental impact on work itself, with more distractions at hand and the lack of motivation produced by the lack of anyone around you doing the same thing.

Fortunately, there are a number of ways that working from home can be made more palatable in the twenty-first century. The same technological advances that have led to an increase in home working can be similarly utilised to provide home workers with more social and colleague-to-colleague interaction, for example through Skype “Shut up and Write” sessions and virtual coffee breaks. For those who can work for short periods outside of the home, meeting up with colleagues at a nearby café or pub to work together for a couple of hours can be a welcome break from the confines of your typical routine, and the few-office-hours nature of academia can mean that arranging for others to work with you from your home are easier to arrange than they would be in many other sectors.

Setting clear boundaries between “work life” and “home life” are even more essential when your place of work is also your home, too: for example, by designating official start and end times to the working day, giving yourself a decent break for lunch (preferably outside of the house), and if possible ensuring that you get out in the fresh air at regular intervals (even if it’s just on the front door step). If you’re lucky enough to have a home office, use this more than any other room so that you can mentally leave your work in that room once the day is over.

While these may seem like very small and obvious pieces of advice, I can speak from personal experience that they really do help: working from home when you have no choice but to do so can be rough going at times, but there are a large number of things you can do to make things easier (and to avoid becoming a hermit): if you’ve got any advice of your own for us home workers, do please post it below!

About the Author

Calum Carson is a third year PhD candidate at Leeds University Business School, whose research explores the business case for the Living Wage amidst the continued growth of precarious work in the UK today.

Coping strategies for disabled academics: self-acceptance and collective solidarity

Written by Marion 

Being a disabled academic is not easy. We frequently require considerably more time and effort to achieve the same as other academics and find some things which seem to be trivial for non-disabled colleagues almost impossible. We may need to achieve a lot more than others for the same recognition. We also frequently come up against a lack of understanding or even hostility when we ask for adjustments to overcome the barriers we face. It is very easy to become dispirited and to think all the difficulties are your fault and feel inadequate and incapable.

The first strategy is to recognise that you are not to blame and that academia is not particularly friendly and sometimes outright rejecting of disabled people. The social model of disability, though by no means perfect, is useful here. It puts the problem and responsibility firmly on society with its infrastructural, social and attitudinal barriers and not the individual and their impairments. It is the lack of large print books, ramps and lifts not the fact you are partially sighted or use a wheelchair that are the problem.

The second strategy is achieving change both for yourself as an individual and more widely for other disabled academics through collective action with other disabled and non-disabled people. There is strength in numbers and working with others reduces the risk of victimisation. This should include joining a trade union. UCU (the University and College Union) in the UK, which also admits (postgraduate) students. Other useful organisations (in the UK) include Disabled People Against the Cuts which is campaigning, for instance, to remove the various hurdles to disabled people getting the benefits they should be entitled to.

In most countries there is legislation about adjustments for disabled people. In the UK there is relatively strong legislation, but no sanctions for not implementing it. While the right to adjustments in the UK is limited by considerations of their ‘reasonableness’, in practice most universities and research institutes are large enough and have enough resources for this not to be an issue. It is useful to encourage your trade union branch to negotiate a policy on reasonable adjustments with your employer. This should include reasonable time limits so that adjustments are put in place quickly and central responsibility for payment to prevent individual departments or schools objecting on the grounds of cost. It should also include disability leave, for instance for medical and other appointments related to your disability, getting a guide dog, learning to use new technology or time off due to changes in your condition. For many disabled academics excessive workloads are a particular barrier and working the nominal 35-38 hour week rather than the 50-90 hour week frequently expected could make a real difference.

If you require reasonable adjustments, you should involve your trade union in negotiating them, and therefore need to be a member. Despite their legal obligations, academic employers are not always helpful and trade union support can help to change this. It is also useful to know about financial support. In the UK Access to Work has been called the best kept secret. It covers, for instance, support workers, additional equipment, adaptations to equipment, fares to work if you cannot use public transport and disability awareness training for colleagues, though the employer might be required to pay a contribution.

The third strategy is talking and exchanging experiences with other disabled academics by electronic media as well as face to face. This can be very helpful in finding out what adjustments, if any, they have and which ones they have found useful, as well as any good practice in their institutions and campaigning strategies that have and have not worked. This can help you determine what additional adjustments might be useful to you, as well as what to campaign for in your institution and how to go about it. Drawing attention to any good practice at competing institutions can often be useful. Talking to other disabled academics can be very important in breaking down isolation and feelings of inadequacy and blame and helping you realise that any problems you are experiencing have structural not personal causes. Talking in confidence to people who understand what you are going through can help you survive when things go wrong.

A fourth coping strategy is recognising your strengths. We all have them, as well of course as weaknesses. The creativity and adaptations we have developed to overcome the barriers we face are in themselves strengths and some of us may have particularly creative ways of thinking and working and/or find easy things which most non-disabled people struggle with. However, when things become difficult it is easy to forget your strengths and creativity and all the positive qualities that enabled you to overcome all the barriers, hoops and hurdles to be accepted into academia. It is easy to fall into a deep hole and feel totally inadequate. It can even be useful to write down your strengths and your achievements at a time when things are going reasonably well, so that you can refer to them in the more difficult times.

The final strategy is keeping a sense of humour, being nice to yourself and not expecting the impossible, or at least not all the time. It is frustrating to have to accept that there are things you need help with or struggle with, particularly when non-disabled people seem to sail through. At these times it is useful to consider your strengths and the times you have helped other people, as well as recognising that the difficulties are due to barriers to disabled people not your inadequacy. Keeping your ability to laugh at things, including difficulties and the pomposity or obnoxiousness of colleagues can be helpful. And the last laugh will be on us, by staying in there and being successful academics despite all the difficulties.

Breaking the Stigma

Written by Juan Pablo Ruiz 

#OktoSay: Let’s Talk Mental Health in Academia

About a month ago, Head’s Together launched their #OktoSay campaign to destigmatize mental health in the UK. Around the same time, a study done in Belgium was published that showed that “one in two PhD students suffered from psychological distress, while one in three were at risk of a common psychiatric disorder.” As soon as it was published, I had three people send me the article. It seemed that, at least in my network, I had become the go-to whenever this type of news showed up. This isn’t surprising given that a year ago, I founded my blog and resource, Labmosphere.com, where one of our core pillars is addressing mental health issues in academia.

Dark and ironic then, that those messages went ignored because I was at the time dealing with crippling levels of anxiety and, for the first time in my life, depression.

When I started my blog, I had just finished taking a free positive psychology course called the Science of Happiness, and before that had been trained as a Peer Supporter at the University of Oxford to help students dealing with mental health issues. At the time, I was dealing with stress and anxiety from my personal life, but believed that when I solved the situation, so too, would my life get back on track. Lab was a haven from everything outside, because things here were objective, and the data flowing continuously.

I was the happy-go-lucky grad student who was known for yelling “Science!” and running into the lab excitedly whenever an interesting result surfaced. I danced through the empty halls of the institute on weekends, blasting music and singing at the top of my lungs. Life was good, science was good. I wanted everyone to experience that. I thought I was immune.

But my anxiety continued to return, especially after I hit the expected third-year slump in my PhD. Sometimes, there was no clear cause or trigger for it; I would spend whole days in front of the computer in lab, using all my energy and lessons in mindfulness to regain the sensation of breathing freely and the ability to focus on my work.

That’s when my aunt, a psychologist who works at a clinic in Mexico, suggested I might have Asperger’s Syndrome, or Autism Spectrum Disorder Level 1. Until then, I had thought I was just unique and quirky: someone who was overly enthusiastic, intense, and avoided weekend plans to spend days shut in his room reading and writing about the strangest of topics. The professional diagnosis came a month later, but the recognition clicked as soon as I obsessively read the resources my aunt recommended. There were others like me, others who understood the gifts and challenges I had been unsuccessfully trying to describe to friends, family, and partners (cue the Tarzan music).

As freeing and joyful as the news was, and as much as I wanted to try on this new identity I was receiving in exchange for the thousands of labels I had accumulated over my life, the diagnosis coincided with a break-up and another slump in the PhD that left me at my lowest self-image I had had in a long time:

Maybe there WAS something inherently wrong with me, rather than just different. Maybe I shouldn’t aspire to do certain things because my brain just wasn’t built for them.

This is when the depression began, and managing that, alongside my anxiety, became overwhelming. It’s something I would never wish on anyone.

Being on the autism spectrum puts me more at risk for mental health issues, but no one is truly immune. The experience did give me much needed perspective: where before there was only empathy for those struggling with mental health issues, there is now solidarity. I too, am walking this path.

I understand what it is like to have weeks fly by without data because your motivation and concentration to work go out the window, what it is like to miss meetings because you’re in bed unable to get up, or hiding in an empty corner of the tissue culture room because you just broke down in tears and how difficult it is to recognise and admit that you need help and to ask for it.

I understand from a deep place of gratitude that having a powerful support network in my supervisor, friends, and family, made all the difference during the recovery from depression, and while I still work on my anxiety. And I understand that, unfortunately, not everyone has such a strong support system available to them.

This is where environment plays a huge role in either mitigating or exacerbating the mental health struggles we can all experience. We cannot continue to ignore the countless anecdotes, now being backed by hard data, such as the Belgium study. These point to the sad truth we must all face: that the current academic culture and environment are doing more exacerbating than mitigating.

Behind each of these data points is a story, a life, some of which are tragically lost to mental health issues. We cannot continue to feel isolated and alone.

Those of us that can and are willing must join our stories and voices to advocate for ourselves and those who cannot. It’s #OktoSay. As someone who has been there, I urge you to reach out. It gets better, and you are never truly alone.

In healing solidarity, Juan Pablo Ruiz.

About the Author

Image of Juan wearing a labcoat
and taking notes in a laboratory
with glassware in the background

Juan Pablo Ruiz is currently working towards a DPhil in Biomedical Sciences. His research interests are in tissue and stem cell engineering, as well as developmental biology. He also has a wide array of interests which include positive psychology, literature, and creative writing. He recently received an ASD level 1, or Asperger's diagnosis, and is now working to break the stigma surrounding mental health and neurodiversity in academia