The Mighty Logo

How Life in the Pandemic Is Similar to Living With Autoimmune Disease

I drove by a farm tonight and as I rolled by watched a bull trying to mount a cow. While humans have more of a selection when it comes to how they actually perform the act, animals are more straightforward. For them, it isn’t necessarily about gratification or pleasure. They don’t experiment. One position for one purpose, which is procreation. What caused me to slow, and then to laugh out loud as I passed them by, was the fact that the male, well he was mounting that poor girl at the wrong end. That lovely girl was swinging her head back and forth as if to say, “No, this isn’t the way it’s supposed to happen.”

The scene I had just witnessed pretty much sums up 2020. This isn’t how it’s supposed to happen. It isn’t what we expected. Just like that poor cow, we looked up and saw something we didn’t expect. Most of us are doing the same as her. We shake our heads as we fight off the next assault. The order we expect, that which we are accustomed to, and the plans we made have erupted. We may not be ready, equipped or even physically capable of handling. Try as he may, that bull was not going to father a calf by mounting that cow from the front.

This past year has inundated us with natural disasters, political and social unrest, human suffering and loss, economic instability and a global pandemic that has changed how every single one of us lives our lives. In general, people like structure and they like their routine. They like knowing that yoga is every Tuesday at 10 a.m. and Friday night is their weekly dinner with friends. Most never gave much thought prior to all this when making a commitment. They didn’t fret about all the potentialities. Now attending social engagements, or participating in what was a regular activity, may be weighed against unknown, perhaps harmful consequences. When venturing out, more precautions are taken. Equipment is acquired and packed to take along. More people plan ahead for what they need so they are prepared if an unanticipated situation arises. Others simply stay home, because why take the chance of making yourself sick?

In general, humans seek out humans. We desire and need, interaction and affection. It isn’t normal to not hug our parents or our friends. Laying on the couch for weeks because there simply is nothing else we can do doesn’t feel right. Just like that cow, heads are shaking in objection to dashed plans, unexpected and unwanted new life patterns. The majority of the world is just learning to live this way. Hopefully, it is temporary, for most that is.

For others it really isn’t so different. We are used to cancelled plans, feeling isolated, needing to isolate and the fear of illness. When we go out we’ve always had to prepare, to plan and to have an arsenal of equipment along with us. We live with the reality that playing for one day may very well take us out of the game for several days, perhaps weeks after. We are accustomed to barrages of unplanned, unexpected and unwelcome, assaults on our bodies. Maybe not from a bull, but from ourselves. We are the ones living with autoimmune disease. And you know what? There are days we would choose to be mounted by a bull coming from the wrong direction over what our bodies do to themselves.

A banner promoting The Mighty's new Spoonie Life Hacks group on The Mighty mobile app. The banner reads, Make life with chronic illness a little bit easier. Join the Spoonie Life Hacks group to get tips from other spoonies for tackling everyday tasks — and share your own hacks! Click to join.

I am not overlooking, downplaying or otherwise dismissing the havoc and destruction this pandemic has wreaked as it traveled around the globe. It is destroying lives by taking. It takes health, time, energy, lives, financial stability, resources and swallows them whole. This is true for far too many. For others, they’ve merely been inconvenienced by the new policies and protocols.

However, autoimmune does the same to those living with it. Every day, for as long as it has been awake inside their bodies. There is no vaccine that will eradicate it, and social distancing is just another side effect that won’t go away. There will be times, after the six foot rule is no longer enforced, we still won’t hug our families because it just hurts too damn much. Even after everything opens back up we will still spend days, or weeks, on the couch or in bed because that’s as much as we can do. We will still be forced to be alone, not by mandates and executive order, but by our bodies.

People will continue to get annoyed as we continue to cancel plans. Not because we have a fear of acquiring COVID-19, but because three hours ago we felt fine and now suddenly we don’t. That’s how swiftly we can be attacked. Or, because we understand that what you want to spend two hours doing will make us useless for days after. We spend, we lose, precious time going to doctors and taking more time than most trying to keep ourselves in the best health we can. We see general practitioners, multiple specialists and adjunct clinicians like chiropractors and naturopaths. We pay out of pocket, when we can, for those things because they help, but insurance doesn’t cover them. We spend unplanned hours in ER. Like COVID, autoimmune steals our health, time, energy, lives, financial stability and our resources. Masks don’t help and social distancing is just a way of life.

For those that don’t live it, autoimmune is difficult to understand and sometimes, even to believe. I’m sure I’m not the only one who has tried to explain it while knowing that the other person/s just don’t get it. They try to sympathize, empathize and commiserate. They’ve been tired or in pain so they think they understand. They don’t. It really isn’t the same. However, this life that COVID has created for society may be the catalyst, the bridge to understanding. The way it took life, shook it up and dumped it on its head is what happens to us, the army of the autoimmune, at any given time on any given day. It forces us, every day of our lives, to make adjustments, to live our lives differently than most, differently than what we were used to, different than how we’d like.

That’s the thing though, we still live our lives. We make adjustments, we improvise, we might go slower than we planned, but we still go. Instead of doing laundry on Monday, we may lay on the couch and end up doing it Thursday. Hanging out and conversing with family at the next gathering may wait until you return from the ER visit that was caused by the latest party taking place inside. All the stuff, all the things, they still happen, they just can’t always happen when we planned or when we want. I know there was heartbreak as people cancelled big plans. However, I also rejoiced at the creativity and unstoppable passion that was harnessed in order to adapt.

This new world that COVID has created has forced adaptation and change. We auto-immuners, well we’ve been doing that forever, and some of us are really good at it. Some days we figure out how to be a part of everyone else. On the days we can’t, we don’t. For those of you who have one of us in your life, next time you get exasperated because we cancelled on you again, I gently ask you to remember when you didn’t go out because you didn’t want to get sick. We don’t either. We don’t want to hurt, or be exhausted because we didn’t listen to what our bodies were telling us. Like you did, or are continuing to do, we are protecting our health. We can’t do much at all with out it. Not any of us.

Getty image by Viktoria_Yams

Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home