I am Autistic - and Covid likely gave me a chronic illness. Here's what I want you to know.
Journalist and podcast producer Lydia Wilkins walks us through her journey with Covid-19.
CW: the photography of pills, chronic illness, Covid-19, discussion of medical care.
Editor’s Note: the writer of this piece is currently awaiting diagnosis, and we cannot take responsibility for any medical information
(Photo by freestocks on Unsplash)
[Image: a collection of multicolored pills including pink yellow, blue, beige, and white]
by Lydia Wilkins
“I hope this isn’t Covid, I don’t want to die just yet.”
I’d been on the phone with my friend, based in the States. An old Navy hand, we speak directly, bluntly - and sometimes into the late hours. I’d returned from a murder mystery weekend away, something that had made me extremely anxious. I’d enjoyed it, but my chest was beginning to hurt, just from the sheer act of talking. The 2 lines on the lateral flow test returned at 1:10 am.
Quarantining solo was quite frightening at times. I could not support my body weight; my hands and arms would meet either wall of my flat, to get anywhere. My legs often gave out, without warning, which was scary when attempting basic tasks like taking a shower. I’d watch as my feet would move across the floor by themselves, without input from myself. My way of walking and balance was significantly impacted. It was surreal and trying to work against this was futile; I’d missed the release of a policing operation report I’d spent months researching, as well as other appointments. Speaking to my speaking agent wiped me out for hours.
Something was not right - I knew it the moment I was no longer infectious.
The fatigue was immense, still, as was the post quarantine anxiety. I’d avoided a birthday in quarantine; a week later friends of mine had taken me out to the Groucho to celebrate. I’d experienced the weirdest episode that day; at the Old Bailey, to stand up for a judge, I needed a wall to support my body weight, and the stairs left me feeling not safe in my own body. I’d experienced a dissociative episode that evening, with the room moving around me. Something was pulling me to the floor. “Oi, fuckface - you still with us?” The other journalist, someone I’d admired as a hero since I was a child, uses expletives to affectionately express concern and worry, I’m told.
The answer, still, is no.
I am not okay. I am nearly 2 months shy of quarantining. The tiredness and dizziness have yet to stop; Long Covid has not yet been mentioned. We are sick as a society yet fail to admit this one simple truth.
Please don’t ask me how I am, and please don’t look at me with pity.
To be Autistic on top of this has made almost every little thing far more stressful than it ever was. The ‘hamster wheel’ of appointments, impossible phone calls, small procedures, and medication, have been impossible to handle. I work as a freelance journalist, as well as producing a podcast - and yet having to stop and start to deal with this takes all my energy. I have not yet worked a full day without needing to go back to sleep to reset myself. I don’t feel like myself at all; this feels like an unwinnable battle, with monumental tasks like getting up and standing, along the way.
I have come to resent the Neurotype privilege I have, since becoming ill. Autism is a fluctuating condition, a disability as defined by the Equality Act. My communication ability fluctuates; specific events have left me mute, for example, though rare enough to count on one hand. ‘I don’t see you as disabled’ is not a compliment and is a misguided bid to treat me as an equal. This and variations of, this have been said so often lately, even just to access specific spaces, medical care, and so much more. It prevents access and is so unbelievably ignorant. If you listen to an individual, you might get somewhere in supporting their access needs. It’s not hard.
Can’t we just listen, sometimes?
A pandemic showed the attitudes Autistic people so often must deal with when it comes to health matters; look up how we are likely to receive less care, for example. If you are non-verbal, the stakes change dramatically. I have the privilege of being able to walk and talk, yet I am so often subject to micro-aggressions daily. Accommodations and reasonable adjustments are rarely made for me, because ‘she can’t be Autistic’.
I have been passed around by many doctors and experts now. So many labels, some a Chronic Illness, have been flouted - and yet no diagnosis is forthcoming. I have not felt listened to at all. I still feel ‘sick’ - dizzy, nauseous, not myself. The disgusting sensory feel of my medication makes me want to be sick three times a day. Information has not been relayed or indirectly withheld from me by health professionals. For the first time in my life, I was compelled to make a complaint against my GP practice, having been reduced to tears by a nurse who was aggressive, as well as used several disgusting micro-aggressions. My mother comes with me to every health appointment now, just because the presence of someone ‘normal’ will ensure, ostensibly, I get the basic standard of care. I feel like a child. Obtaining medication has often been arduous, leaving me depleted. ‘Managing’ is hit and miss, my frustration almost tangible, a metallic taste in my mouth, at not being able to keep up. I resent this. Bitterly.
This is normal. It shouldn’t be. If you’re surprised, then you haven’t been listening.
To expect an education all the time, or for people like me to complain about a measure of accountability, would be a lifetime of work. We are human beings, we cannot always, and should not have, constantly advocate for our needs.
Attitudes have been fascinatingly contradictory. I feel like screaming every time someone tells me “You’re young - you’ll get better!” The entirety of the pandemic has taken up a large chunk of my twenties, the fallout will likely mark the rest of the decade. My age is not a guarantee of health or the absence of illness. It is naive to suggest otherwise. Telling me to “look on the bright side” is massively invalidating, as well as the well-meaning individuals who say, “but I have it worse with X”. Can’t we just listen, sometimes? People exist outside our own universe. We have undergone a huge historical event, collectively. Some of us just need, at a very basic level, a hug, and to be allowed to cry. We need to be allowed to be sad, sometimes. It is always men who offer (read: often enforce the use of) me ‘an arm’, hating to watch me wobble when this makes the issue so much worse. Comment about masculinity and the need to rescue a maiden what you will. Apparently, I am lazy, with walks, fruit, vegetables - or ‘feeding up’ ostensibly a catch-all cure.
Don’t let anyone tell you what happened to you isn’t shit or a big deal.
Then Barbara Met Alan inspired me, really; I’d been watching from the sickbay, at the behest of my Adopted Aunt. The “piss on pity” motto made me smile - I scorn the pity of the sad eyes and awkward silences, those who insist I am ostensibly ‘vulnerable’ by ticking a box that says ‘other’. All my life I had dreamed of working as a journalist. In reality, I have found this industry unaccommodating, lacking in diversity, and very often ableist. The hypocrisy of some when it came to harassment was/is utterly disgusting. But a newsroom is where I feel at home; it’s a living, breathing operation. I have seen the attitudes toward chronic illness up close before; it leaves me pessimistic and disbelieving for the future, for the specific career I have dreamt of.
Then a WhatsApp message left me in tears one evening, from my aunt. I was feeling so lonely, and I don’t feel understood; I don’t want to hear ‘you’re sorry’. You’re not sorry - you are just grateful you haven’t caught this infection! Here's what it said...
“Don’t let anyone tell you what happened to you isn’t shit or a big deal. It is but you will deal with it cos unfortunately you have to. You will survive and thrive. X” She sees me - and she allows me to go at my own pace, to suspend the worry and stress for just a moment. We all need a friend like that, really. I count myself lucky.
So, so lucky.
Lydia Wilkins is a freelance journalist and speaker. She is also the producer of The Disabled Debrief Podcast with Conscious Being Magazine. Her debut book, The Autism Friendly Cookbook, is out in November 2022.