When a non-visible disability becomes visible

As the three year mark of having Long Covid approaches, I’ve been slowly trying to pick up the pieces and stitch them together to create some kind of new life. A big part of that is returning to work. No-one, except those close to me, sees my bad days, it is for the most part a largely non-visible illness. It took me a long time to not hide the impact of it from those I love, partly out of a sense of protection for them and partly because it meant I had to acknowledge how bad the bad days can be.

But stepping back into work, albeit, part time, has put me in a position where it’s not always possible to keep my symptoms from view. In the past couple of weeks, I’ve had two instances where my cognitive impairments showed up in a work setting. Both times I lost my words. For long, conspicuous moments my brain became an empty and desolate place. There was nothing I could do, except attempt to explain what’s happening and wait to see which words return and when.

Buffering…

At home, in private, this is less of an issue. My husband is excellent at deciphering ‘the thing’ and identifying what I want to say but which my brain won’t allow me to. But few others are privy to this unnamed code. I feel like to them, I am buffering. Stick a spinning pizza wheel of doom on my forehead and call me Mac.

I feel like this is one of the lesser talked about areas of disability in the workplace. As I go about existing in the world, so too does my chronic illness and all its symptoms. I cannot control when something flares, be it the Postural Orthostatic Tachycardia Syndrome (POTS), brain fog, or pain. When these things happen in public, around people you work with, new colleagues or clients it’s hard.

I was embarrassed, both times. A professional communicator who can’t communicate? Did they think I am underprepared, that I didn’t bother to put the effort in? Or that I don’t know what I’m doing? The urge to over-explain, to justify and convince them that I do know what I’m doing is only quelled because I do not have those words available either.

Negativity

Much of this fear stems from internalised ableism, something I’m trying to unlearn but which keeps popping back up to remind me how long a way I still have to go. But some of it stems from the way non-disabled society perceives disability, particularly disability in public.

I’ve found over the years that people will say they’re comfortable with disability when asked in an abstract way, but when a disability is visible and directly in front of someone that’s not always the case. Lack of awareness, ableism, thoughtlessness, they can all cause negative reactions and past experiences of dealing with hurtful and unhelpful statements can make disabled people wary. It’s always, sadly, in the back of your mind that someone could just be a d*ck to you about your disability, impairment or chronic illness.

Acceptance

When it comes to the two most recent incidents, accepting it had happened took time and I worried about it and apologised for it. Should I have? I don’t know. It’s easy to feel you want to say ‘hey this is me and this is what it’s like’ but less easy to say, even after so many years and particularly to those in professional settings.

Those doubts and worries are hard to shake, even when, in the cases I mention here the people on the other end were not only accepting but stressed how I ok it was for me to have these moments. I wish it was the universal response – acceptance, empathy, patience – but for too many disabled people our disabilities are only tolerated as long as they’re not inconvenient.

Facing up to this reality and learning how to manage this new set of challenges, emotionally and practically, in a work setting will be an ongoing mission for me. But for those on the other side, you have a choice; if thoughts and feelings pop up take the time (and I mean in your own time) to unpick where that ableism comes from. Act with acceptance first and foremost.