Ever since I disclosed my CFS, a number of people have been in touch. Some of them shared their experiences of being, shall I say, a ‘wounded academic’. What it means to be chronically unwell in Academia. This post is an account of those interactions.
Before I start, a reservation is needed. I don’t claim to speak for anyone or on behalf of anyone, this post is not representative of anything. It’s my account. For rhetorical purposes and ease of writing, sometimes I’m using the pronoun ‘we’. However, it is not meant to disclose which parts of what I am about to write I have experienced and which I haven’t. Instead, this post is intended to draw attention to a number of problems. And so, here it comes – a story of the chronically ill researcher ,the way I was told it by a few.
The fact that no one cares, is something ‘we’ expected. There is no free lunch. What we didn’t expect is how quickly we become unattractive. Very quickly collaboration opportunities vanish because we’re late, we can’t handle it today, because we need to lie down. This is because, apparently, the world cannot wait till tomorrow. Tomorrow is always too late, even Shakespeare’s work might disappear tomorrow, as our discoveries are counted in minutes, seconds….’We’ become a drag on the amazing work our colleagues accomplish every minute of every day. Obviously.
All of a sudden, we become a burden, obviously, an unspoken one. As it happens, somehow, we’re no longer in that discussion, on that mailing list, in that conversation. It’s uncanny how quickly and how many communication channels are closed. Quietly. But what’s really irritating is the rhetoric. Gosh, we’re surrounded by the rhetoric of so much support that it should carry us a metre over the ground. We should be floating as support-elves offer the never-fading smile of the Cheshire cat, as they gently appreciate us, our work and the contribution the chronically ill person makes to the world and, possibly, also to the fate of the galaxy.
We get our work done, sometimes we do a normal workload, sometimes not. Interestingly, when we do get it done, very quickly it becomes normalised. It’s not understood as more of an effort, as an achievement. If anything, if you do the work, it actually suggests that you’re not ill, so what’re you on about? If you don’t do the work, well, that’s a problem. It’s always a problem. You can’t run? Get a bloody bike and keep up. Yes, the rhetoric here is even more pronounced. We’re all sooooo civilised and supported, and yet, somehow Professor Stefan Grimm, from Imperial, about whom we all very quickly stopped talking, is never far away.
‘We’ tend to agree that the worst are those illnesses which can’t be seen. If you start walking with a cane, you’re almost lucky. People will see you’re ‘wounded’. If your illness happens to be invisibly debilitating, then you’re in a much more complex situation. You can behave ‘normally’, putting a mask on (masking depression for example is a well-known phenomenon), so people see a ‘normal’ you. Except that you become healthy then. The alternative is worse, though.
And then there are the little things (I am a fan of the little things). The pained expression after disclosure, the best wishes after the first conversation very quickly change into the normal ‘How are you?’ after which we’re supposed to say ‘Great!’. So many times something like ‘Like shit!’ is so close….but that would probably make things worse. So, we tend not to say it. Yes, some do, but it makes things worse. Apparently, it is aggressive. Of course, we can’t expect people to remember…
Now, what appears from my interactions is life on the fence. On one side is illness, on the other is health, and people with chronic illness are engaged in a ‘danse macabre’, unable to go either way. It’s life of unending liminality, performed for others, as they drag us away from a spectacle we might become, which they cannot face. But it’s also a continual crash course with the rhetoric which is as sugary and it is nauseating. As Academia becomes an ever-faster conveyer belt, you must find a way to keep up, or at least pretend to keep up. There isn’t and there cannot be space of chronic illness in the predatory Academia.
The only other alternative is quitting or early retirement, if you can. And I guess these were the saddest stories. Because this is not retirement, it’s an escape. If tomorrow is always too late, you must try and save yourself.