Do We Really Need to Put a Label on Things?

Useful Background Knowledge:

1. As of the time of this writing, our county has more confirmed covid-19 cases than over two-thirds of all U.S. states.*
2. We don’t own a car. This makes “avoiding public transportation or ride-share services” challenging.
3. Our “primary medical provider” is one of those commuter rail trips we are supposed to avoid if we show any symptoms away. Once I had a team set up that knew EDS, I saw no reason to upset the apple cart when I moved.
4. Guidelines still recommend that anyone who feels sick with any “core” covid-19 symptoms first contact their primary care for a phone screen and only seek out testing if “symptoms progress.”
5. Neither my Partner nor I run classic fevers. I will run them randomly when I have the flu or strep, but it’s always a coin flip whether any given illness will trigger one. Even when I do run them, I swing wildly between “above normal” and about 95 degrees over the illness course. My Partner’s baseline body temperature is 96 degrees, and he can count the number of times in his life he has run a classic “fever.” If he manages to hit 98 degrees, I know he’s pretty sick.

It is extraordinary awkward, uncomfortable and anxiety-inducing to have to take sick time as a trauma survivor in normal times. I almost always feel an intense “don’t look at me” discomfort from trying to figure out just “how much” to explain about why I am daring to ask for time off. How much do I need to “justify” that I’m really sick, and how much does my inevitable over- and/or under-explaining just make things more awkward?

Taking sick time during a global pandemic – especially when I happen to live in a location where that draws more attention than “usual” – is even more awkward. I really, really do not want to ever come across as a “girl who cried wolf.” I really, really do not do well with calling attention to myself or figuring out how to respond to “do you need anything?” I do not like having people offer to bring me contact-less groceries, even though that is actually really sweet of my coworkers. It still feels like it sets up obligations that will be worse than being politely ignored. I also really, really do not like other people asking “well, okay, but do you think it is…?” when I don’t have a car, don’t quite have a high enough “fever,” and medical advice says I should self-isolate and notify my doctor if things get worse. How does one answer that when no one “official” is providing any comforting labels – one way or the other – that would let me conclusively prove to myself that I’m not “making up” that I’m even sick in the first place?

Oh, and I really really hate that we still don’t quite know how common it is for mildly symptomatic cases of covid-19 to not run fevers. Medical establishments might be comfortable telling a trauma survivor who is sick – but not dangerously sick – to isolate and keep in touch because traveling to testing sites without a car is riskier than staying home, but, it sure will make that trauma survivor feel like anything she says in response to “well, okay, but what do you think it is…” is putting herself out on a ledge.

Whatever thing my Partner and I both have reached that rare level of illness symptoms wherein we conceded we had to take sick time. However, my temperature initially did only its usual bouncing and my Partner’s actually dipped lower. Then – just when I had convinced myself I was probably making all of my original symptoms up because sleeping most of the weekend had rendered me totally “fine” – our temperatures finally spiked a bit. And, we realized we actually weren’t “over it.” My temperature has been running just over 99 this past week, and my Partner’s reached over 98. And, we have found new levels of fatigue to go with the return of our coughing, sore throat and generally crummy feeling.

Despite crashing out right after work (and a couple times for naps between meetings during the day that I made up for later), though, the first week’s experience with sick leave was awkward enough I have been content recently to just tell everyone we are “still pretty tired, but better and it wasn’t like we were planning to go anywhere anyway.” No more attention, please! There is nothing more to see here! We’re fine!

Yet, our lack of any formal testing and now somewhat awkwardly persisting – though thank goodness comparatively “mild” – symptoms have made me feel like eventually everyone is going to say I never deserved any concern in the first place. I keep bracing for that moment when concern (as when my boss texted me while I was asleep last weekend to ask how I was doing and seemed genuinely worried when I didn’t answer until I woke up the next day) inevitably changes to “How dare you have claimed you had a right to us worrying about you? You are so selfish.”

By the standards of our global pandemic – even if the assumption that seems to be prevailing among my colleagues of “well, you both are probably just one of those mildly symptomatic cases. I mean what else could it logically be anymore!” is accurate – we really are comparatively fine. If we’re cases at all, we aren’t cases that require out-of-home treatment. I haven’t claimed anything.

Everyone else has been awkwardly solicitous and drawn their own conclusions despite my best attempts to demure. And, I keep waiting for the inevitable whiplash. I keep waiting to be accused of being a faker or a drama queen.

And because we don’t really know what we have – and we won’t for reasons of our lack of vehicle and our ability to recover at home – and it would be deeply uncomfortable for me to “claim a label” even provisionally that I don’t feel I have any right to claim.

Labels are a thing for me.

I felt immense relief when I finally got my ADHD label. It was a concrete alternative explanation to there being something inherently defective about my character that I could brandish against my own trauma history. I was not all of those things I’d been called (crazy, stupid, selfish, oh my!). I was just ADHD. I have a much more complex relationship with owning ASD. Given my sibling’s situation, “autistic” has featured prominently in both of our trauma histories as “one of those words” that have multiple kinds of bad things attached to them. I still feel very weird about how and when I want to refer to it. I have usually ended up just skirting all unpleasant memories by rolling both up into a single “neurodiverse” label.

Labels have been both swords and shields for me. As shields (as with the ADHD part of my neurodiversity) they have been things I can wave around going, “Look, I really do have something. I’m not just a crazy self-centered freak.” As swords (as with the ASD part of my neurodiversity) they became just another synonym for those same “alternative” explanations for what was “wrong with me.” To hear “autistic” was to hear “You aren’t like your sibling. You don’t get to claim any reason for why you are a [insert list of horrible things here.] So stop ‘pretending.’ You don’t get an excuse.”

Labels are a thing for me, and I know it is a privilege to have been able to even get them in the first place to have a thing about them at all.

Even if I don’t ever feel comfortable personally applying any labels to myself that someone “official” hasn’t formally assigned me using the most “rigorous” testing possible, I also completely accept self-diagnoses of neurodiversity from others.

The US’s lack of access to testing in healthcare fields doesn’t just apply to our utter and disastrous failure to prepare for covid-19. I know well that it applies to too many other labels in the mental and chronic illness and neurodiversity worlds. Individuals of color, individuals from low-income neighborhoods and those who don’t fit the “stereotypes” of what a whole host of other “labels” are “expected” to look like too often have sit with that same level of “But, do I have a right to even let others suggest I might have X,Y, or Z?” that I am presently feeling over whether I’m a comparatively “mild” covid-19 case for many years, often, before correct diagnosis (if they are diagnosed at all.) Self-diagnosis is critical for marginalized communities so long as persistent biases and lack of access remain the norm in psychological testing. I get that. I agree.

I accept self-diagnosis and believe it is crucial to righting past social injustice labels. I’m well aware that just not having a label for whatever has been making my Partner and I feel sick doesn’t mean we can pretend what it couldn’t be. Don’t worry, we’re properly “acting like we already have it” with covid-19! (And you all should do the same, fever or no!)

I just have a thing about labels, and that thing is being poked at uncomfortably with our current “you need to isolate, but not be tested because it’s hard to get to a testing site” situation.

I vacillate wildly between clinging to labels like a security blanket and them being their own form of trauma. Thus, I have to admit, I kind of wish either my Partner or I were running “enough” of a fever right now to somehow “have” to get an “official” covid-19 test. Something “official” – and external to what the bully-in-my-brain and past voices still tell me is my fundamentally “selfish” nature – would just be able to “settle” things, right? I’d either be able to conveniently deflect all those “precarious” shows of concern with, “Oh, don’t worry, it was negative” before they can turn south on me, or I’d be able to tell myself “I tested positive, no one can turn this around on me and claim I was making anything up.” Either way, it wouldn’t, at least, just be me speaking about me anymore. It would be “real.”

My Partner is content not to be able to “put a label” on our being sick “officially.” In theory, I am content to follow guidelines, self-isolate, and recover at home without a label for the episode. In practice, it has become one more reminder of how complicated labels are for me.

Thus, I was very glad to read that supposedly we’re getting widespread antibody testing soon. Maybe, at least, soon I will be able to actually put one of those external labels on things that I really shouldn’t need to not beat myself up, right?**

*I add “at the time of this writing” because too many states are “re-opening” next week and will very likely provide some competition for my area (at least at the state level) in the near-ish future. Good luck especially to anyone in Georgia who regrets the last governor’s election being so marred with refusals to recuse, voter suppression and other outright nastiness that they now have no way to avoid being exposed.

**At least, until Useful Background Knowledge #6 – “My Partner doesn’t build normal antibodies to things. He got chicken pox as a kid, but later had to be vaccinated against it anyway because he never developed antibodies the first time” – mucks that one up, too?

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