Being covid cautious is a very socially-isolating endeavour. Most people think we have some psychological disorder, and that’s putting it very nicely. I feel alone and lonely for continuously writing about this, since this is a topic that is not being acknowledged by most bloggers.
I am used to writing about socially-isolating and taboo topics. I write about my chronic illnesses, passive suicidality, queerness, rage against this world. I have been writing about these things for much more than a decade, back at a time when people were still hiding in various closets. But none of them has made me feel more socially isolated than being covid cautious.
But I continue to write on despite my discomfort, because I would like to live as authentically as possible, and that includes expressing my reality in writing. Being covid cautious takes up a lot of my energy in my day to day life, and it would be weird to write about everything else in my life except for that one thing that defines a lot of how I live. I am upset at society for denying covid’s impact on us, and I don’t want to contribute to that denial.
It is tempting though. To not address the elephant in the room. With family and friends they can pretend the mask on my face doesn’t exist and we can talk about everything else under the sun except that one thing. If I never ever broach this topic again they are probably willing to put up with my strange behaviour, and our relationship can probably largely be maintained over some form of pretense. I can even talk about my suicidal tendencies and it would be empathised and accepted. Just not this one thing.
It is the same for this blog, or any of my social media accounts. If only I would stop. posting. about. covid. I would probably have a lot more genial relationships, and feel a lot more socially integrated.
I have not unmasked with any other person apart from my partner and dentist for maybe around 3 years? That means no warm family dinners, no coffees with friends. I am mostly antisocial at my baseline, but even I miss hanging out with people sometimes. Sometimes old friends fly in to Singapore and I haven’t seen them in a decade, but still I choose not to meet them.
Why?
I guess we’re the sum of our accumulated life experiences. I have been chronically ill before being afraid of viruses was a thing. I have spent the last decade doing nothing much except recovering. Even now I have to be careful with what I choose to do in order to avoid a relapse of my chronic illnesses.
My previous experience with an invisible chronic illness had already familiarised me with what it feels like to be socially abandoned. Co-incidentally today I came across someone’s else writing on this:
“The experience of finding the world isn’t set up for you anymore (or not set up for you in ways that are new to you) is difficult and emotional, and made much, much harder because you are also dealing with changes, which we often experience as loss—loss of ability (in that you can no longer do things you used to be able to do), future plans or dreams, and of social status and social relations that themselves come from those other changes. We may also lose friends—and social status—because of people’s attitudes toward chronically ill/disabled people. Because they don’t have a frame of reference for chronic illness—and illness/disability is regarded as tragic—people who aren’t chronically ill aren’t entirely sure what to do with us, which is scary and uncomfortable for them.”
– source
I cannot describe the chronic trauma I’ve been through for the past decade and how much it has negatively impacted me and my outlook on this world and its people. People avoided talking about my chronic illnesses as much as they now avoid talking about covid. I received almost no support, no questions of “how are you coping”, no acknowledgement of my struggle. I had to spend a lot of money over the years in order to receive the treatment I needed. Money is one thing, but the sheer trauma of having no end in sight for years and years while being in perpetual pain is not something I can accurately articulate in words.
At my worst – which lasted years – I had no relief. There was no good days. None. When I got better, I could enjoy one good week every month. During this long period most people didn’t bother to find out how ill I was, how much I was struggling. I had to put up with people close to me insinuating that my symptoms were all in my head. The problem is could be me. I was in a dark place so I couldn’t reach out, but nobody reached out to me either.
There was one shining light. My partner. The only person who witnessed all the times I laid helplessly in bed in between violent bouts of regurgitating my food and knife-like pain. I am convinced that without her I wouldn’t be alive today. What is the point of such an unacknowledged and disconnected existence?
So. To be honest. I am not willing to risk my health over social relationships. Because I know if and when I am ill again I would be facing this fight mostly alone with my partner. No matter how close people can be, they will not be co-paying my medical bills. I was fortunate enough that I was still able to afford my treatments, and I shudder to imagine alternative outcomes.
I know this is a very depressing view of human ties. But this is my reality. Maybe there are some fortunate people out there with strong social support, but if we trawl around the online communities for the chronically ill we will know that being socially abandoned is the norm, not the exception. I haven’t even started on what it feels like to have doctors gaslighting you too (thankfully for me, traditional chinese medicine has a long-established framework to treat chronic illnesses).
Maybe to most other human beings it is unsustainable to live without a social life. But I have experienced what it is like to live without my health and I fear that way more than having questionable ties with family and friends. I have navigated most of my life alone anyway. My partner can give me as much emotional support as she can, but I am still alone in experiencing my pain.
I value being able to write, to lift weights, to run, to draw, to eat, to poop, to sleep. I don’t want to risk all of that hard-earned capacity in order to feel less socially alone, especially when I know one of the worst forms of loneliness one can feel is being chronically ill – not only we’re being abandoned by our social circles, we are also being abandoned by our body and our mind.