My COVID-19 Fears as a Chronically Ill Person Are Valid

Yesterday, Dr. Bonnie Henry told British Columbians like me to create some holiday hacks around having a safe Thanksgiving during a pandemic. She offered options spanning from virtual meet-ups to smaller guest lists to individually-plated meals. Not surprisingly, she was met with both misogyny and ableism, and not just from random strangers online, but from people who love me.

You may love me, but you certainly do not see me.

“Did you see the new recommendations?” I say to a family member traveling from one part of the province to another— something we have been told to avoid to help curb the spread.

I want to ask them what their bubble is like, what precautions they are taking, and if they have been around anyone who has been potentially exposed. I want to tell them they will need to wear a mask inside my home and I want to tell them to wash up when entering. I want to tell them to remove their shoes. Cough into their sleeves. Keep social distance.

I want to assure them this is not overreacting because I read a lot of news reports and did the research. I want to tell them I wish they’d be thinking of this stuff, too.

“What the hell does Dr. Bonnie Henry know anyways… ha ha ha?”

A single response cuts the conversation.

Questioning Dr. Henry is also questioning me following her advice. Questioning Dr. Henry is also questioning COVID-19.

Questioning Dr. Henry is a privilege I cannot afford.

Thanks to self-work, I can tell these family members will not respect the boundaries I have created for my feelings of safety. Therefore, I cannot host them. I can carry that guilt and even set it aside for a while. I can offend and annoy and frustrate. This is nothing new, but owning it is.

This is not a “personal choice”

A life-long friend and mom of two tells me of a fight that happened after I canceled our Friday night-in. It’s not my fault, of course, it was only about me. Her common-law just got home from working away and thinks I’m “silly” for not coming over. She agrees.

To be fair, I offered to come over so long as we wore masks while painting and sanitized our hands. Big ask, I know. In the past, she has said she’s perfectly fine to “accommodate.” Last night, she said it was OK if we wanted to postpone.

Here’s where the fight started: Her spouse wanted to play poker and she didn’t agree with him doing so based upon COVID, so he essentially called her a hypocrite.

If I am silly for staying home, he is justified in going out.

Logic is so fun to play with, isn’t it?

“I told him it is your personal choice,” she says. “And you don’t want to potentially expose my children if you get exposed over the weekend.”

Is this what I told her? And where does the word “choice” come into play here? I am the only one making and taking precautionary decisions, but they are not fuelled by “choice.”

Is it a choice to distance yourself during a pandemic because you live with chronic illness? Is it a choice that others see me as perfectly healthy and regard it as overreacting? Is it a choice to be acting like the only autonomous adult in the room?

“‘Stupid’ Dr. Henry! I mean, she isn’t stupid, I know you… but this whole thing…”

What whole thing, friend?

The pandemic?

She goes on without pause.

“We know the facts. We know the virus is here, and we know it’s not going away, ever, and we know you’re going to be exposed at some point, and it’s gonna be like a mild cold and flu. You may as well get it over with. You do know only autoimmune and people with underlying conditions…”

She’s on autopilot, like she’s heard this a few times too many. Does she forget? I don’t want to be the one to interject, but dammit I have to. A sick feeling rises in the pit of my stomach. Ugh.

“People like me.”

From the other end of the phone, I raise both of my arms.

See me.

Pause.

I have said these very words to her at least twice already during this pandemic. Putting a face to the faceless doesn’t matter? It has to, I tell myself. It has to.

“I just can’t even read or talk about it anymore,” she says. “Fear mongering.”

Raise your expectations

Repeat after me: It is OK to expect things from others.

It has taken me long to learn this because I was unlearning avoiding expectations = avoiding disappointments.

People who live with chronic illness, whether it is fibromyalgia, depression, or PTSD should have expectations of the people we share our time and energy with, but all too often we let self-stigma stop us from receiving what we deserve. Do you know how exhausting it is to be the only person trying to keep a bubble safe? Everyone should have each other’s best interests at heart rather than choosing the path of least resistance.

It’s not only able-bodied persons, either. Some of the worst judgments come from those in the chronic illness community who are in such denial they lash out instead. If they can do X, Y, and Z and not get the coronavirus, dubbed “the rona,” then surely my safety precautions are baseless. I am overreacting. Avoiding. Making excuses. Being silly. Letting anxiety control my life…

I am also trying to protect you. And your loved ones, too.

In the beginning of the pandemic, I repeated the term “asymptomatic” more times than I can count. Those around me refuse to accept that which they cannot see.

I am healthy. I am “clean.” I am safe. These words hold such powerful social connotations, don’t they?

There is nothing “so complicated” or “so contradicting” other than our human desire to read into loopholes.

We do not like rules. But rules are here for a reason. The rules of wearing a mask and not sharing plates and keeping a social distance are in our best benefits. Science shows it and deep down these people must know it too, no?

Expect them to.

If nothing else, read this

I interview medical and health experts for a living, and still, some family members would rather talk about China’s connection to COVID. My friends still listen to their male counterparts who get their information from random websites and memes. They tell me they wish I wasn’t “freaking out” again. We are in a second wave and coming into flu season. Facts do not change minds.

I cannot keep having the same conversations so many months into this. I cannot keep expending energy trying to convince you to care about someone outside yourself and step into their shoes for a single moment to see how this may affect them.

“Only those with autoimmune and other conditions…” Do you realize how many people, including many of your loved ones, this includes? I do not think so.

If your loved one tells you they do not feel comfortable, safe, or well enough to attend this holiday or any other, listen to them. Like, actually listen and hear them out and trying your hand at empathizing. Are they anxious? Depressed? Scared? Do they need some help? You love this person and care for them, do you not?

Instead of dissing Dr. Bonnie Henry’s sound and science-backed advice, ask yourself what you can do to make things safer for everyone.

Suggestions include asking them to show up to a virtual dinner, dropping off dinner at the door, or taking the necessary precautions as set forth by your province to reduce risk.

Remind yourself of the compromised individuals in your own bubble — and be honest about how big those bubbles have become over the summer months. Remember that everyone in your bubble has a bubble and COVID is not the same as the flu. I can’t stress that enough.

TLDR: People with chronic illnesses have valid reasons to be experiencing this pandemic in a different way than able-bodied persons. Trust us when we tell you what we need. Help us instead of mocking us for making responsible choices.