COVID Testing Being Autistic

My body is still shaky as I write this. My legs barely able to keep me on my feet without instantly collapsing.

I have just returned from a COVID test. And, while unpleasant for most people, it can be a very different level of stress, pain and anxiety for me as an autistic person.

I woke up yesterday with a horrible headache and a good dose of hay fever. All good, nothing to worry about. Still, as I gobble up painkillers and anti-histamines in huge quantities, nothing gets better at all and I really feel quite miserable. So time to check my temperature. And here we have it: 38.4C. All processes, thoughts, plans, buttons, wires and switches in my head move into emergency mode.

I have to get tested. I have to make an appointment. I cannot go to the shop. Do I have to pick up my child by car? Or can he be brought home by someone on public transport? My child can’t go to school tomorrow. Despite being sick, and already needing a lot of rest when not sick, I won’t get any chance to rest because I will be home all day with my child. I will have to take my child with me when I get tested. I need to inform the school. How long will it take to get the test result? I need to cancel the appointment with my friend, which by now has been postponed four times and actually is starting to become kind of urgent. Oh, I forgot to inform the day care.  What am I going to do with the plums that needed to be made into jam, but for that I need to go to the shop to buy ingredients, which I can’t do now, but then the plums won’t be good any more by the time that … I am diverging, the plums really don’t matter that much. But my work. How do I adjust my schedule now? I can’t work with my kid at home – that’s okay – but I really needed to make that phone call… also I really needed to get some earth from the shop so I can plant the potatoes. And the potatoes really need to be planted by now.

Being autistic, every change, every unexpected event, can be a major source of stress, tension and anxiety, even without these thoughts filling up my head. More than a year into the pandemic, I have been in quarantine often enough to tell, that every time I have to quarantine, even if it’s just for a day or two, it takes me weeks to recover from it. The sudden unexpected change, loss of routine and evaporation of any possibility to rest, has a real and immediate impact on my body. And I am not even talking about further implications for my mental health. I am exhausted, stressed, have no energy, while muscles everywhere in  my body are so tense that I struggle to lie down flat on my bed. I struggle to fall asleep and at times I hardly sleep at all. I am even more sensitive to any kind of noises or strong scents. Opening the kitchen cupboard, being met by the scent of that jasmine tea that I usually love, instantly increases my stress level by 200% and it doesn’t just go away by closing the cupboard again.

Morning comes and I am driving to the test facility. I was lucky to get an appointment with ‘my’ usual facility. So I know the route, the process, the location. I know what to expect. That helps.

..until I stop the car in front of the person holding that swab. Again, I know what to expect. Only this time, that doesn’t seem to be an advantage. I know that it hurts. Not just a little bit. It seems to be unpleasant to most people. But it appears to be hurting me more. Not surprising as autistic people often tend to experience pain and other sensory stimuli differently from neuro-typical people.

Ever since it took them 3 painful attempts to get the test done I have made it a point to first check the swab and make sure they are using the smallest size available. But now the smallest swab suddenly doesn’t look that small anymore.

As the swab makes its way to the back of my throat, I pull back my head instantly. My body tense, tears rolling over my face. It’s not a physical gag reflex. The swab barely had the chance to touch my throat, by the time I pulled my head back. It was sheer fear of what was to come.

“Sorry”, I mumble, “I’m a bit scared.”

The woman doing the test, tells me in a calm voice, to relax my body.

A task that proofs absolutely impossible to me as more tears run over my face.

The woman has me put my head onto the head rest of my car seat, as she goes on with the procedure, and more tears are rolling over my face.

In my head I am not crying. There are just a few tears rolling down my cheeks. I couldn’t possibly be crying, as I don’t recognize any emotion in me that would typically be associated with crying.

“Mama, why are you crying?” my child asks from the back seat, as I start the engine to drive away.

“Because I’m scared”, I answer almost automatically. “Grown-ups sometimes are scared, too”, I continue to fill the puzzled and maybe worried silence in the car.

“I guess, I was crying after all”, I am silently thinking somewhat puzzled by that unexpected occurrence.

As that realization sinks in, my child ensures  me that I have done so much better than last time. And I counter by telling him that the last time he got tested he has done so much better than I did. To which he proudly replies, “That’s true! After all, you didn’t get a diploma for courage. And I did.”

We arrive at home at 10 a.m.. A whole day ahead of us. My child sick from my shaky driving. I am still holding back tears, feeling like my legs could collapse under my body any moment. We likely still have 2 days of quarantine ahead of us. With another couple of weeks for me to recover from the stress.

Meanwhile I hear people announcing on national television that they cannot wait to get drunk and party. It seems like we don’t live on the same planet.

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