Over a year into the COVID19 pandemic, I still notice the recurring theme of people discussing pandemic fatigue and about wanting life to be normal again. I think it goes without saying that everybody would appreciate it if life did go back to normal. But the focus on “normalcy” ignores the reality that millions of disabled and high risk people have had a very different objective since early pandemic times: safety. 

The past year has been difficult for many, and I do not want anybody to think I am downplaying the various difficulties that come with something like a pandemic. To have your life completely altered overnight is scary and traumatizing, no doubt. But as I continued to isolate, I watched people cling onto their own normalcy at the risk of themselves and others. Thankfully, nobody caught COVID. But what stood out to me was the fact that they simply had these opportunities to hang onto normalcy, whereas my only option — painful as it might be — was to stay inside and isolate from my closest loved ones for over a year. It’s not that I didn’t choose to attend certain events or get-togethers, because I quite literally did not have a choice. The risk of me attending anything, per my doctor’s advice, was and continues to be too high. So what does that mean for me? It means people continue to gather without me, risking themselves and others, allowing themselves to enjoy social comfort in the name of “pandemic fatigue.” And all I can do is watch from inside of my apartment.

The World Health Organization defines pandemic fatigue as “demotivation to follow recommended protective behaviors, emerging gradually over time and affected by a number of emotions.” Then, what is pandemic fatigue when one has no choice but to follow protective behaviors?

On March 29 I tweeted:

And to be quite honest, it’s true. I and many other high risk people have had to sit back and listen as strangers freely do what they want. We watch loved ones cautiously do what they want, attempting to brainstorm justifications for their actions along the way. We are ostracized from the social get-togethers others use as an escape from their own pandemic fatigue, and we are further shunned for being deemed the fun suckers. We listen to government officials deem our safety as just “too complicated” to secure, and read twitter threads from the governor’s COO that strips us of our identities for the sake of their own propaganda.

And reader? I’m tired. I’m tired of pretending that watching people put others at risk for COVID isn’t draining, or that the apathy people show towards my concerns, whether it be loved ones or government officials, isn’t devastating. I’m exhausted.

I keep asking myself: where do we go from here? How do I reconcile the fact that society is indifferent about my life and lives like mine? How do I continue to care for myself in a world that watches me with antipathy? I’m not yet sure what the answer is. I have tried to keep hope that perhaps peoples’ experiences with the pandemic will create a shift in perspective, allowing others outside of the “disabled” experience to muster up some empathy.

Yet as the pandemic begins to taper down, it’s almost as if the empathy for high risk people has even further decreased. The pandemic is starting to become a non-issue in the eyes of many, creating the illusion that it is now also suddenly less of an issue for high risk people. The post-vaccine invitations begin, with people making plans mere weeks after they get vaccinated to go to the movies or travel across country. I’m not quite sure that I have the wherewithal to continue explaining to people that even with a vaccine, my doctor expressed that it is still unsafe for me to “return to normal” with my immune system. I’m not sure I have the energy to continue disappointing people by being the ‘fun sucker.’

I do have hope for a post-COVID world someday. But forgiving and moving past the societal disregard for the concerns of others’ health and safety is going to take even longer to accomplish.