I Don’t Want to Dance in the Dark: Disclosing Mental Illness and Neurodiversity in the Ableist Academy by Marco Miguel Valero Sanchez

When I saw the call from Voices of Academia on Twitter actively seeking contributors to share their stories on mental health and well-being in academia, I thought: Wouldn’t a blog be a great way to share your own experiences with depression and ADHD in academia? Wouldn’t it also be an excellent opportunity to raise awareness about mental illness and neurodiversity in general? Why shouldn’t you give it a try? As usual, I was very tired that day. I had a sleepless and restless night, an unexpected panic attack in the morning, and a stronger depressive phase overall – perhaps because I already had a few days of holiday. I find such days off always give you the ‘opportunity’ to think intensively and continuously about yourself, your body, and your mind – whether you like it or not.

Perhaps my mental state was also the reason why my initial enthusiasm was immediately overtaken by self-doubt and pessimism, asking myself: Why would anyone care what you, of all people, have to say about the challenges and difficulties of managing mental health and well-being in academia? Who exactly would care about your personal story? And above all: Why would it make any difference and to whom? In fact, I cannot say whether anyone will read my personal story, care about it, or whether it will make any difference at all. But maybe these are the wrong questions and expectations to begin with. What I can say with absolute certainty, however, is that every voice matters with regard to mental health and well-being – in academia and beyond – and that every voice helps to shed light on a still taboo and mostly invisible topic. And in this respect, I am confident that my voice matters as well.

Feeling different, seeking help

Strictly speaking, my mental health story begins in the summer of 2019. I was around 9 months into my PhD, and I had given many presentations, gone on various conference trips, and participated in endless workshops and meetings. By this time, my sleep was shorter and more fragile than ever before, and I was really exhausted and agitated. With the support of my boyfriend, I decided to seek professional help and started looking for a therapist. Unfortunately, this search was unsuccessful, even after several months, as my symptoms were consistently labelled as “simple sleep disorders” and therefore not worthy of therapy. As you can imagine, I was angry and shocked! Subsequent participation in a three-month mindfulness and stress management training program proved also unsuccessful. It could not prevent my sleeping disorders and mood swings from getting out of control, and my attention and concentration from slowly deteriorating. This was accompanied by constant feelings of emptiness and guilt, a pessimistic outlook to the future, and increasing suicidal ideation. The latter was also the main reason why I decided to talk to my general practitioner in January 2020 about my changed mental state and to start looking for a therapist again. At this point, I was really helpless and distressed. I felt that ‘something’ had seriously changed in me – in my body and in my mind – and that I desperately needed professional help.

I was incredibly lucky and privileged to find an excellent therapist in March 2020. Both my therapist and my general practitioner then confirmed what I had already suspected based on my own research on academics with invisible disabilities and chronic illnesses: I was dealing with depression, which had crept in unexpectedly over the last few months. On the one hand, I was relieved about the diagnosis because my symptoms finally had a name that helped me access appropriate treatment and medication. On the other hand, I was puzzled and confused to hear the word ‘depression’ out loud, because it meant that I had to deal with this diagnosis and learn to accept it. Accepting the depression diagnosis is a process that continues to this very day. The process become even more complicated when I was diagnosed with ADHD several months later in July (and later in September) 2020 by two different specialists which I had consulted on the advice of my therapist. It became my ‘year of mental health diagnoses’, as I call it retrospectively. Although I had already received a few other diagnoses in my life – a chronic thyroid deficiency, a cardiovascular disease, and chronic inflammation of the haemorrhoids – the diagnoses of depression and ADHD felt completely different to me. It meant that this time my state of mind had been affected and that my way of thinking and feeling had slowly changed over time. But what does this actually have to do with working in academia?

Opening up in the academy

When it comes to depression and ADHD in academia – as with any other invisible condition – several questions arise: Do I have to disclose my conditions to my colleagues and supervisors at work? Is it okay if I only talk about certain symptoms or do I also have to disclose a diagnosis? What impact will this have on social interactions and future career prospects? Wouldn’t it be easier not to talk about it at all and just keep everything to myself? Of course, I have asked myself all these questions and – to be honest – I still do. In the end, however, I have decided to be relatively open about my experiences with mental illness and neurodiversity in the academy.

I have reached a point where I can talk openly and honestly about my conditions when colleagues ask me about my general health and how I am managing my PhD project. It means saying that I have a therapy appointment and therefore I cannot meet at a specific day and time instead of talking about a generic ‘doctor’s appointment’. Overall, I try to be visible and openly identify as a depressed and neurodiverse scholar – or at least a disabled scholar – in academic presentations, seminars, conferences, and on social media. And it means that I have been able to take this great opportunity to blog publicly about my experiences with depression and ADHD in academia. On the outside, all these words might sound incredibly self-confident and almost flippant. On the inside, I can assure you: it is quite the opposite.

After I had received my diagnoses, I thought for a long time about whether or not, when, how and to whom I should disclose my conditions at work. Of course, I was concerned that people might turn away from me, look at me strangely, or treat me differently. I felt extremely vulnerable. I was also worried that disclosing my mental illness could jeopardise my academic career, especially due to the associated stigma that people with mental illness are  ‘lazy’, ‘weak’ and ‘unreliable’. To be honest, I am still afraid that my identity as a depressed and neurodiverse scholar may one day have a negative impact on my employment in academia. Nevertheless, I decided to be honest and open about my conditions towards familiar and trusted colleagues. However, I have chosen to disclose more casually and gradually towards colleagues rather than preparing a big announcement or speech each time. I purposely avoided going door to door with my diagnoses and saying, “Oh, by the way, I have depression and ADHD, have a great day!” And there is a good reason for this decision.

For many years, I didn’t accept the fact that I am gay and I have always tried to pass as a heterosexual man because I was afraid of stigmatisation, discrimination, and exclusion. I always avoided discussing my sexual orientation or I made things up so that no one would be suspicious that I could be gay. And of course, I have always denied it to myself and wished far too often that everything was ‘normal’ – that I wasn’t gay, but ‘normal’. Denying my own sexuality and identity and keeping up appearances has not only cost me many friendships, but also a lot of time, energy, and strength to fit into the (hetero)normative framework of society. In the end, I was just exhausted from all the hiding and pretending. It was equally exhausting, then, to come out to all my friends and family and tell them that I am ‘now’ gay and to get some kind of acknowledgement or blessing. And that is exactly what I wanted to avoid with regard to depression and ADHD.

I wanted to decide on my own terms when, how, and whom to disclose my conditions at work. l wanted to have a sense of control over my story and my self-image. As a result of my experiences, talking about my depression and ADHD with colleagues has been incredibly important for me. Not because it was anyone’s business or because I was forced to do so,  but because I wanted to share it. Because I didn’t want to pretend or hide again. And because it has helped me to come to terms with my symptoms, my diagnoses, and my disabled identity.

So far, I have only received positive reactions and a great deal of understanding. This is probably one of the main reasons why I have decided to disclose my disabilities in other academic settings as well. However, the fact that I have only had positive experiences in the past does not protect me from discrimination and exclusion in the future. Discrimination and exclusion against disabled people exists everywhere and can occur at any time, both inside and outside academia. In this regard, disability disclosure is always an emotional, sensitive, scary, and risky decision. But I take the liberty of saying that it is particularly scary and risky in the ableist academy.

The daily struggle between academic work and mental health

Academia fosters a working environment that prides itself for overwork, hyper productivity, and high performance, where scholars are expected to be available 24/7, cannot take holidays or breaks, or they take holidays but continue to work anyway. And where fixed-term and short-term contracts are the rule rather than the exception. As a disabled academic, I not only need to manage my own mental health and well-being, but I also need to succeed in this work and employment system that is primarily designed for the able-bodied and able-minded scholar. And this is exactly what makes it so difficult to identify as a disabled, chronically ill, or neurodiverse academic and to talk about disabling structures – when this system leaves only little room to talk about disability, chronic illness, or neurodiversity at all. In a system that is almost entirely focused on cerebral work, it is even more difficult to openly admit that you are dealing with a fluctuating mental and neurodiverse condition. I have often questioned whether it is even possible to balance these realities?

In my view, the answer is yes! That said, I have to admit that balancing academic life with depression and ADHD is anything but easy; often I try to focus on my work while my thoughts are racing in my head and my mind distracts itself constantly and goes on an extended journey with my attention and concentration. I try to be attentive and awake while tiredness slowly settles over me after not sleeping properly for days. I try to smile into the camera even after the 20th meeting while my depression hangs on my shoulders and slowly but surely pushes me down. I try to stay calm while I wait anxiously for months to hear back from a journal about whether my paper has been accepted or not. And I try to keep several doctor’s appointments a week even though I believe that I should be sitting at my desk and working through the day. I could go on endlessly, but I think it has become clear what I am getting at.

Succeeding in this system as an academic dealing with depression and ADHD is extremely difficult because it creates unnecessary pressure and leaves no room for time. It is filled with endless uncertainties, insecurities, and dependencies that further exacerbate my restlessness and pessimistic outlook to the future. As a disabled academic, it makes me question continuously whether I am working fast enough, whether I am working long enough, whether I am doing my job properly, whether I even belong in this system. I take this opportunity to say to myself and to all those who identify with my words: Yes, you do! The pace at which I work is just right, the amount I do is just right, the motivation I put into my work is just right, and the quality of my work is just right. I am a passionate academic even though I don’t do much work in the evenings and don’t work until midnight. I am an ambitious academic, even though I take holidays and breaks regularly to relax and regenerate. I am a hard-working academic, even though I don’t work on weekends and I don’t rush into every potential project that pops up right in front of me. I am a reliable academic even though, or precisely because, I set myself limits and regularly take care of my body and mind. And I am a serious and ‘normal’ academic even though I go to therapy, take antidepressants and other medication, and live and work with ADHD and depression. So yes: I belong in this system just like everyone else.

What is left to say in conclusion?

As I have written before, disclosure in academia is always an emotional, sensitive, scary, and risky endeavour. However, I don’t want to finish this blog post without also outlining the benefits I have experienced. One of the biggest benefits so far has been meeting and connecting with numerous inspiring people, students and academics who have had similar experiences and with whom I share my identity. With regard to ADHD, I was incredibly lucky to find out about the ADHD Hive on Twitter, a community of people dealing with ADHD who meet online to work, write, and celebrate while engaging in wonderful conversations about life. These sessions are incredibly important to me. They help me to better focus on my life and work and they remind me constantly that I am enough and not alone in this endeavour. 

Disclosure can be a powerful and effective tool to draw attention to structural problems, inequalities, and injustices in academia and beyond. It can also be a powerful and effective tool to break the silence and stigmatisation of mental illness and neurodiversity – of any invisible condition for that matter. That said, I look forward to the time when people have equal access and opportunities in academia regardless of their disability, sex, race, social class, sexual identity, gender identity, and colour of their skin. I also look forward to the time when marginalised people in academia no longer need to disclose anything to anyone ever again because it is completely safe, ‘normal’, and okay to just be themselves in public. Until then, let’s work together to make sure they can continue to tell their stories.

Marco Miguel Valero Sanchez

Marco Miguel Valero Sanchez is a PhD candidate in Sociology at the Leibniz Center for Science and Society at Leibniz University Hannover, Germany. Currently, he is a visiting researcher at the Department of Educational Research at Lancaster University, UK. In his PhD project, he explores the lived experiences of academics with invisible disabilities and chronic illnesses at German universities. His research focuses on the process of disability disclosure in academia as well as the working and employment conditions for disabled and chronically ill academics at German universities. He’s on Twitter @MValeroSanchez.