Living Unseen: Navigating Work with a Hidden Disability

Advocating for Inclusion in Research

The Centre for Trials Research Equality, Diversity and Inclusion (EDI) Group is a small group of volunteers from across the Centre who are passionate about all things EDI for our staff. We look at processes, celebrate major diversity events, and ensure that EDI stays on the agenda of what we do as a Centre and for our staff. Every year, we focus in on one of the protected characteristics, as defined by the Equality Act 2010. In 2023, we are looking at disability as our focus for the year, and as part of this we are aiming to create a short disability-positive video about experiences of invisible disability from our staff, to share as part of our efforts to make CTR a more welcoming environment for new and existing partners alike. In an environment where lived experience can be so important for the work that we conduct, encouraging those experiences to be shared and inform our practice is critical.

The Second Job: Living with a Chronic Condition

One of the things I’d love to talk to people about is how much of a difference a line manager or supportive colleague can make to your experience of disability. Those who suffer from chronic conditions – hidden or otherwise – might be familiar with the feeling of having a “second job”, where managing your health becomes a full-time role in and of itself. I know I certainly am. Many of you may or may not know me as a sufferer of CFS/ME. My condition’s impact ranges from the minor where I can’t get the hoovering done for a second week in a row, to more profound impacts where I’ve missed birthdays, family gatherings, even full days of holidays, physically unable to get out of bed or the house. Nobody told me when I was diagnosed that I’d rarely have a restful holiday again!

Navigating Disability Identity

I was diagnosed in my teens with my condition. Post diagnosis, I was switched onto a graded exercise programme that was a huge shock to my system. I went from swimming 20 hours a week to only being allowed to walk to the end of my road and back. It was jarring, as much as anything because despite what felt like a really severe response to an illness I didn’t know existed – much less understood – nobody really used the term “disabled” with me. After all, when I’m well, I can be scatterbrained and occasionally a bit brain-fogged, but that’s not too unusual. And in my teens, missing a bit of college wasn’t really flagged as out of the ordinary either, even when I was missing half of my classes.

Under a social model of disability, this lack of reference to being disabled made some kind of sense. At the point I first left with the new addition to my medical records, it wasn’t really clear how impaired I would be, nor what shape my condition would take over time, or even what path my life would take and how all those elements would interact. It might’ve been premature to label me disabled at point of diagnosis or even when trying first-line treatments, given that CFS/ME (like many invisible illnesses) have a unique impact person-to-person.

Doing the “First Job” with Hidden Disability

However, as a result, it’s only in recent years – since joining Cardiff University – that I’ve come to see myself as disabled at all, and almost by the fortune of having disability-aware colleagues rather than by something designed to flag this to me. I’ve found this is a common experience amongst fellow spoonies (a term used by some of the CFS community – you can read about Spoon Theory here: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/) and others with long-term or invisible conditions. We might not ask about reasonable adjustments, or consider how we report our Bradford Factor because that’s for disabled people and while we’re different, nobody’s stopped us to think about whether we are.

When I joined the University, I started on part-time hours as I thought I was physically unable to do more than that per week. Despite literally thinking I wouldn’t be physically capable of full-time work, it still didn’t cross my mind to tick the HESA box that says “disabled” when I filled in my HR record. It was only when I shared with my line manager at the time that I wanted to do more hours, but didn’t feel able to take the risk with my health that we opened up a discussion about disability. They took the time to understand my constraints, my concerns and how I could manage myself with a few tweaks. They pointed out that if I felt un-able, then that should be enough to consider myself dis-abled.

Clearly, I’m not working part-time any more, and I embrace disability in a sensible way now. It’s made a huge difference to my professional life and ability to progress, and has equally helped me manage my personal wellbeing in a way that actually means I miss out on less nowadays. A few workplace conversations opened up the world to me in a way that I wouldn’t have imagined possible – and I wanted to write this call to action, and put together this video, to enable more folks to have those conversations and feel a bit more confident broaching what can be an awkward subject to start discussing.

Invitation for Summer 2023

What I’d like from this blog is to speak to other people who are happy to share their experiences of unseen illness and disability. I’d like to hear about the good, the bad, and the ugly, so we can put this together in a way that might enable more people to talk openly about their health and their wellbeing, and feel supported in the choices they make. I’m hoping this will also be helpful for line managers and colleagues to help kick off some of those discussions, and maybe give them a bit more insight into how someone you work with might be juggling more than you realise.

Over the summer, I would like to invite staff from across CTR to get in touch with me via email to arrange a chat and – if you feel up to it – a video discussion that I can edit together for the EDI group to support disabled staff and colleagues in the future. There’s no pressure to participate, even if you just want your voice heard but don’t want to take full part, I’m willing to listen. You can contact me on dentonr3@cardiff.ac.uk or on Teams Monday – Thursday. I’d love to hear a bit more about the different experiences folks have had, and hope we can come together to create something really positive by September 2023.