The last several weeks have been among the most difficult in my Foreign Service career. From my perspective, life has been worse overall these past two months than during the prior 14 months of the pandemic put together. This might be hard to understand and even a little hard to believe, given how many people – at least in the U.S. – seemingly feel their lives are finally returning to some sense of normalcy. But it isn’t hyperbole. As an immunocompromised person who has been living with autoimmune disease since my late 20s, and who is currently slipping into the public policy and social chasm between the vaccinated and the unvaccinated, I truly feel left behind and isolated during this stage of the pandemic. Although I continue to be employed, meet my weight loss goals, and heal from back surgery, the rest of my life has become a slow rolling nightmare I never anticipated. I’m surrounded by a society that feels ignorant and selfish at best and eugenicist at worst, and rocketing towards a future where COVID-19 is endemic and those of us with compromised immune function face never getting our normal lives back, as everyone unapologetically eats cake right in front of us that we once talked about eating together.
After five months of sheltering in place in Virginia in 2020, followed by the past year of working in Ciudad Juárez where everyone wore masks and distanced as we waited for a vaccine that would protect us from COVID-19, I was able to stay completely healthy.
For the first time in over a dozen years, I was able to be busy and work as hard as I wanted without ever catching a virus – not so much as a sniffle. I spent lots of time talking with people in the office, and never got sick. We all wore our masks: a sign of respect for one another. “We’re in it together, until we’re all safe,” we said.
My hours got longer and I never broke down. It was astonishing to me. The camaraderie filled my heart with joy during a difficult and scary time. For the medically vulnerable, the pandemic was a weird “dream come true,” in the sense that healthy people finally understood some of the things we had understood for years. Everywhere seemed safer for us, despite the COVID-19 danger.
Deep down, I did feel guilty that something so terrible as the pandemic – marked by the illness and death of millions, economic disaster, the interruption of education, global disruption of work and family systems, the suspension of travel and all the social isolation – had any silver lining for me.
But the truth is, with people forced to keep their germs away from me for more than a year, I was able to become the person I was meant to be. While the pandemic controlled the whole world, my autoimmune disease finally stopped controlling me. (Mostly anyway; I still had flares and other unpleasantness that is part of managing a chronic illness that attacks and recedes, and does not abate with adequate rest. But the colds, flu, viral infections, pink eye, little wounds that took forever to heal, and other suffering caused by – and barely affecting – healthy people that had so often punctuated my life suddenly ceased to exist, halted by masks and lockdowns.) I always knew living a bubble wouldn’t last, but I relished my relative safety.
I was vaccinated against COVID-19 in February 2021, although most of my colleagues were a couple of months behind me. I was careful to always keep my mask on and my hands clean after my vaccination, not only because it was workplace policy, but because it was the ethical thing to do. I prepared for major spinal surgery in March and avoided any illness or injury before or afterwards with the utmost care.
My colleagues and I all longed to be together in the office, to be done with virtual meetings, to share a meal together, to take our masks off. We talked about how it would feel to finally have a party in the office where everyone could come in and be together in person. I can’t wait until we get vaccinated too, they said enviously to me. You will, I reassured them, through my mask. You will.
Once spring 2021 came around, my colleagues all finally had their turn for the vaccine. That aligned almost precisely with my return to the office from spinal surgery, in which my immune system was lower than ever and I was moving very slowly, trying to find my way back to my own version of health and normalcy.
Then the CDC decided that vaccinated adults no longer needed to wear masks in most situations, and things started to change quickly.
First, masks and social distancing lifted across the United States in mid-May. Living only four miles from the U.S.-Mexico border, the mask-shedding behavior in Texas vs. the more cautious behavior among Mexican society in Ciudad Juárez, where the majority of the population remained unvaccinated, was stark. Cases in the borderland and the rate of community transmission were still scary.
I tried to reconcile the ending of these protective measures based on “CDC guidance” when it seemed everyone was focused only on the CDC guidance for healthy people. The CDC had also delivered a nasty shock via a small asterisk most missed: advising vaccinated immunocompromised people to behave as if they had never been vaccinated, based on unclear vaccine protection to people with autoimmune or immunosuppressed conditions, until scientists understood better how to protect this vulnerable group. After initially shedding my mask and then abruptly realizing that the vaccine I had waited for for so long may have not had any effect, I was devastated.
But nowhere in its guidance did the CDC make clear to healthy people this distinction. Over and over the message was, “If you’re vaccinated, you’re safe, and if you’re not vaccinated, you’re not safe.” I couldn’t help but notice that immunocompromised people, including those with organ transplants, those taking immunosuppressant medications, and my colleagues fighting cancer (I can think of several), may have not received any protective factor from their vaccines. So what did that make us for practical purposes – vaccinated, or not vaccinated? Both, and neither.
Then my workplace lifted its mask policy and a few weeks later, lifted its social distancing policy for vaccinated adults. My attempts to point out the difference between vaccinated immunocompetent adults and vaccinated immunocompromised adults, and advocate for inclusion to support immunocompromised people at this stage of the pandemic, did not lead to much illumination or understanding of the issues.
Most often, the legitimate medical concerns of those being left behind are framed as people who are just anxious and don’t want to get back to normal, or people who are lazy or who have conduct issues, rather than the appropriate continuation of mitigation strategies everyone else in the world has been employing for over a year to stay safe waiting for a vaccine.
Social distancing and masking have no remaining appreciable benefit to the community, the new guidance explained. I read the words over and over and over again. They flew in the face of medical and CDC guidance for me. I’m not included in the community anymore, I realized, feeling suckerpunched. When you leave your home to serve your country overseas, being part of a community at post has an outsized importance compared with a U.S.-based job where you go home at the end of the workday to a fully-developed support structure of friends and family.
“No appreciable benefit.” In one black and white line, I lost my place. Immunocompromised people were erased from the community as it celebrated the “end” of the pandemic and a return to normalcy. And the message was, the safety measures we all used to do which are still medically indicated for the immunocompromised are suddenly illegitimate. Unnecessary. Irrelevant. Part of an old paradigm of fear and anxiety. Based on preference and those crazy germaphobes will eventually “get over it.”
There was no language directed at healthy people about their role or responsibility as allies or as ethical human beings in this space. Take your masks off and enjoy your safety. And if those who aren’t safe don’t join the party they weren’t invited to, the least they can do is have the decency to go home and stop interrupting it. After all, when everyone was at risk, health was everyone’s responsibility. Now that only the medically vulnerable are at risk, their health is their personal responsibility. And just for extra fun, we’re going to give the healthy people swords and take away the shields from all the unhealthy people. And don’t get mad and say you’re being set up to fail here. Because, personal responsibility.
Why are we putting the medically vulnerable at risk, when they also have a right to a safe workplace and answers on booster shots and what level of immunity will be protective for them? Why are the UK, Israel, and France – who are all issuing booster shots to their immunocompromised populations – so far ahead of the United States on these issues? What is the impact of ableism that only considers the needs of healthy people?
I will tell you. It feels like being in a video game trying to avoid your maskless colleagues in the hallway and elevators. The same ones who you protected, and who you thought were protecting you. You now understand that the majority of people actually protected one another during the pandemic out of pure self-interest, because as they became safe, your lack of safety was of no interest to them. You know most of them are vaccinated, and a few aren’t, but you don’t know which are which. Everyone has a right, apparently, to question your need for space and force you to disclose and justify your need for continued mitigation strategies, but heaven forbid I ask who in my workplace could kill me so I can stay away from them.
It feels like being afraid at the gas station when someone gets in your face for wearing a mask. “You don’t look like my doctor,” I snap back. “And what I’m doing is affecting you less than what you’re doing is affecting me.” To which usually comes a nasty or condescending reply.
It feels like discrimination listening to others talking about prioritizing “everyone’s” health and safety, and diversity and inclusion, while promoting in-person events that are designed and organized in a thoughtless way that makes it legitimately unsafe for you to attend.
It feels like despair when the only suggestion for your continued physical presence at work is an invasive, lengthy, and bureaucratic reasonable accommodation process you did not request and do not want (and would have to pay all medical costs associated with) involving legal and medical entities you don’t trust or need involved in your relationship with your supervisor, declaring forever and ever amen that you are disabled with unknown future impacts to bidding and assignments, when no one else had to do that in order to take the physical distance from others they needed in order to not die while waiting for their vaccine.
It feels like we went from an “in it together” mentality where people protected one another to an “everyone for themselves” mentality where all the responsibility to keep yourself safe is transferred solely onto you, in conditions that no longer facilitate it. Everyone having been in your shoes a few short months ago doesn’t stop it from being an arduous intellectual exercise to explain this to anyone.
And others will disregard your arguments underlining medical facts and data and apply instead emotional arguments about you just wanting to “wait and see” that you will be unsuccessful in labeling as emotional arguments. But when you finally break down in tears because you are being set up to fail, it will be clear that serving your country while being a woman is an occupational hazard filled with never-ending reruns of “If a Man Had Raised This Issue” while the government scratches its head and conducts studies to determine the reasons for female officer attrition.
In the hallways. The bathrooms. The elevators. The looks. The comments. The complete and utter lack of regard for the effect of one’s behavior imposed on others. It’s not over for me, I wanted to yell. Colleagues continually came so close to me that they were practically standing on the edge of my shoes. Can you please give me some space? I asked one person. She looked at me first with surprise, then with mild pity and disdain. Her lack of mask let me see her facial expression perfectly.
It feels like realizing that the people you would have walked through fire for don’t care about you at all.
Within three days of the policy change, I got a raging cold and was in bed an entire three-day weekend, just in time to watch everyone else on social media having fun. I seethed with betrayal and resentment. I couldn’t figure out whether disclosing my health issues that were none of strangers’ business to try and gain allies was a better solution than simply turning and walking away. My cold necessitated multiple doctor visits and prescriptions, and eventually turned into a lung infection and pneumonia. I needed a steroid shot, a chest X-ray, two COVID tests, multiple drives to El Paso, sleeping in a separate room from my husband because I was coughing all night, and on, and on, and on. “Routine illnesses will return,” a colleague said dismissively. My chest felt like I’d been hit with a hammer as I continued working on a big project.
“Can everyone wear their mask around you?” my doctor worried. “No,” I said, the word barely coming out. “Well,” he warned, “if you catch this, you’re at high risk for a very poor outcome.”
I watched the first party happen in the office. My team laughed, talked, ate, shared stories, maskless around the table. I brought champagne, but didn’t want any. I’m not supposed to be around unmasked people indoors, so by its very nature, the party I waited a year for was something that largely excluded me. I’m so glad we can all be together, someone said. I tried to be happy that everyone else felt like it was time to celebrate, but watching your own life from the outside as everyone moves on without you is painful. Watching people you protected put you at risk and feeling conflicted because you genuinely want them to be happy feels like a suckerpunch. I retreated to my office to work and closed the door.
Another afternoon, one person walked into my office without a mask on to ask me a question and chuckled. “Wearing a mask in your office?” He gave me a look that was friendly but also like I was a little nutty. I’d had enough that day. I blurted out, “I have autoimmune disease,” as my eyes filled with tears. The person looked at me blankly and after a moment, changed the subject, still standing too close.
Sometimes I tried to explain to other people what was wrong. “If you’re not ready to work out in the gym with other people…” someone started. “No one’s really wrong though,” someone else ventured. “I’m sorry this is happening to you,” a maskless colleague said from my doorway as I steeled myself not to cry into my palms.
Happening. Like something that everyone was powerless to stop. Like something no individual person could say was wrong, or ableist, or discriminatory, or cruel. Happening. Like something no one is participating in. Like a faceless stranger hitting my car and then fleeing the scene, leaving me holding the bag and without recourse. I’m sure everyone is sorry, but what good does that do? I don’t need them to be sorry. I need them to stick up for me like this were “happening” to them.
“I want this to be a positive environment for everyone,” my colleague continued. I sat stunned. Have I become the negative force because I refuse to cede my place and am saying this is unfair? Didn’t everyone else already have enough of what they needed?
I started to wonder if I was in the wrong. I asked if I could attend the award ceremony to receive a meritorious honor award from my boss in person. Ultimately, the guessing game of seating, medical concerns not being handled privately, and social distancing being treated as an ostracizing afterthought dissuaded me. I RSVP’d to attend online. The MC said when announcing my award, “I don’t know if she’s virtually present. I’m pretty sure she is!” I took screenshots of all my colleagues receiving awards and posted them in our team WhatsApp, even though I felt left out and disappointed my name wasn’t included on the list of those receiving their 15 year length of service awards, and mine is already a year late. I thought the pandemic had changed what being present meant, but maybe we are already forgetting.
Two recent social events included either unvaccinated children or no self-drive option, and I couldn’t be included in either. I approached the organizers of both to try and find a way to attend. One didn’t acknowledge my concerns, the other jumped backwards and joked whether he would catch a disease from me if I came to the party. I simply turned and walked away. I deserve to be in a “positive” place too, and it won’t happen as long as we are pretending this is my problem or something to manage by myself.
If immunocompromised people don’t get answers from science soon, and/or if society doesn’t find a way to help us get back to normal, I fear there will be a divide that mirrors some of the polarizations and splits we see in U.S. society at this time. And what will that look like for decades of disability rights? What will it look like for professional access to spaces where immunocompromised people need to be? Who will speak up against the ableist majority putting up institutional barriers and forcing people with damaged immune systems away so they can be comfortable without their masks?
Immunocompromised people don’t need more reminders to take personal responsibility for our health. We don’t need society to assume our care because we are too lazy or busy being victims to take care of ourselves. We just need a fighting chance and time for the science to catch up. We didn’t get to choose who was included in what studies and when! We need less discrimination. More inclusion. More empathy. Less ignorance and obliviousness. More people to be honest and to hold space. And for others to stop interfering with our rights.
A more honest translation of “Sorry this is happening to you,” would be “We have a choice, and we choose to suckerpunch you, because / getting my life back is more important than you being safe / I don’t care about disabled people / I choose not to get vaccinated / I’m tired of wearing a mask / I don’t believe I’m a threat to you anyway / I don’t have the courage to advocate on this issue / I think you’re overreacting.”
At least that would be less of an intellectual insult than saying everyone’s health and safety matters when the truth is we are (a) unwilling to do the hard work to be an inclusive society when that takes away privilege and comfort from the able-bodied majority individual, and/or (b) we’re unwilling to confront people who will not vaccinate themselves to create a protective bubble around people with low to no immune function and who have no choices.
An immunocompromised patient in a recent WebMD article I read said it all perfectly, so I am closing with her words below.
Though the rollout of the COVID-19 vaccines has allowed many Americans to find some pre-pandemic normalcy, little has changed for Victoria Graham of Washington, DC, who is still exercising the same heightened caution she did in early 2020 because she is immunocompromised from a complicated medical history that includes Ehlers-Danlos syndrome.
“The pandemic isn’t over for everyone,” says Graham, 27. “Those of us who are immunocompromised are so vulnerable to COVID. I think it’s difficult for people to understand if they are lucky enough to have a healthy body and a strong immune system. I just wish more people realized how many are still deeply impacted by the threat of this virus. But unfortunately, it feels like so many people now are screaming with their actions and showing that they don’t care or aren’t thinking about what risks they’re imposing on those of us who are immunocompromised. It’s lonely, isolating, and a hard phase of the pandemic to be living through…
“As someone whose body doesn’t have the ability to fight infection overall, the risk of COVID exposure remains high for me and would result in serious hospitalization or illness at best, and death at worst. So, I’m still exercising incredible caution in what I do, where I go, and who I’m around. I just wish people understood how complicated life is for immunocompromised people right now, were more understanding about it, and willing to help. And I wish we knew more about how to protect ourselves, too.”https://www.webmd.com/lung/news/20210715/pre-pandemic-normalcy-far-off-immunocompromised