Why aren’t we talking about living with chronic illness during your PhD?

I have accumulated many, many notches on both the ‘diversity’ and ‘adversity’ scoreboards in my life. When a new hardship rolls around I am experienced at how to cope:

  • 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, one of the most comforting thoughts was ‘Well, maybe I’ll make some new (also disabled and completing a PhD) friends out of this!’

It turns out that this has been harder than expected! First, I scoured my University’s website for resources or services. 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. Prominent PhD support blogs, such as the Thesis Whisperer, PhD Life, and Get a Life PhD, are silent on the topic. 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.

I did come across the wonderful PhD(isabled) blog, but this has been dormant for over a year and is hosted in the UK where the disabled PhD experience is very different to Australia (they have a Disabled Student Allowance!) Besides, why should a discussion of the added struggles of disability and/or chronic illness be limited to specialty blogs? Indeed, a very large proportion of people doing a PhD must surely live with chronic illness – just like the general community, right?

There is no denying the double-layered Valley of Shit that the combination of chronic illness and a PhD provides: it is undeniably awful. Whether the illness brings pain, depression, fatigue, anxiety, decreased mobility, 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. A myriad of additional support is required, most importantly a supervisor who is able (better yet: trained!) to provide at least some support for unwell students.

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’re all just struggling through on a solo journey, with no acknowledgement of the extra-phenomenal nature of our achievements?

Maybe I am alone in this wish, but I would love to see a better network of disabled PhDs. I would love to see some resources about how to manage. And I would love to see PhD support services acknowledging that we exist. I think we deserve that.