My Heart Condition Gave Me Access To The Vaccine. Why Did I Feel So Guilty?

In late December, my mom told me she had just found out she would be getting the COVID-19 vaccine the following day. After months of worrying that my over-60 parents would get sick with COVID, I could now be sure that one of them, at least, would finally be a lot safer. The fact that she was eligible for the vaccine came as a surprise to me, her, and the rest of our family, but Tennessee, where she lives, had prioritized mental healthcare workers. My mom, a therapist, snagged an appointment without much trouble. Still, there was one obstacle: her guilt. 

My mom confided in me that, even though she qualified, she felt bad getting the vaccine since she'd transitioned to seeing clients virtually and thus felt like she wasn’t at a higher risk than any other 62-year-old. I have to admit, I kind of scoffed at her reservations. She wasn't breaking any rules. Plus, she had worked tirelessly throughout the pandemic to support her clients, as well as her family and friends. Her guilt, in my mind, was completely uncalled for, and I told her so. After some reassurance, my mom went through with the appointment and was fully vaccinated by January 28. About two weeks later, my quick dismissal of my mom's vaccine-uneasiness just a distant memory, I found myself experiencing nearly identical feelings of guilt when I found out I was eligible for the vaccine in New York — far sooner than I'd anticipated.

On the day that New York Governor Andrew Cuomo announced vaccination eligibility was expanding to include New Yorkers with comorbidities and underlying conditions, I scanned the list of what would make a person qualify and saw "heart conditions, including but not limited to heart failure, coronary artery disease, cardiomyopathies, or hypertension (high blood pressure)." Could it be me? 

I was born with a congenital heart defect called pulmonary valve stenosis. The valve between my heart's right ventricle and pulmonary artery had not developed correctly in the womb, and, as a result, blood flow between the two was obstructed. I had a series of open-heart surgeries as a two-day-old, one-month-old, and two-year-old, none of which completely fixed the problem. My time in the hospital as a baby left me with seven scars, the two largest of which run from the top of my chest down to my stomach and across the entire right side of my back. My heart, too, was left with a hole, which means my oxygenated blood sometimes mixes with unoxygenated blood. What does that mean in my daily life now? Honestly, not that much. 

Okay, don't get me wrong, having multiple surgeries before the age of three and missing a piece of a vital organ has definitely had a profound effect on my life and has had consequences for my physical and mental wellbeing. But now, at age 28, my lack of a pulmonary valve doesn't loom so largely in my life. Yes, I am reminded of my health situation every time I walk up a flight of stairs, since I’m inevitably left winded, but that extra sweat and panting are, at worst, inconvenient and mildly embarrassing. As I've gotten older and gained more control over what my day-to-day life looks like, I've had to face fewer harsh realities related to my condition. Because my diagnosis isn't something I think about all the time or even every day — especially now that I spend most of my time in my apartment rather than, like, walking up hills — I wondered if I was truly deserving of the vaccine. 

I confided my concerns to a few people, and just like I did with my mom, they acted swiftly to assuage my guilt about receiving my jab and encouraged me to sign up for an appointment as soon as possible. The rational side of my brain took over, and I made the decision to book something, but the guilt persisted — and actually got worse. 

Navigating through the hoops of booking a vaccine appointment was a stressful nightmare. I had to dig through Reddit message boards to find tips about when and where new appointments were posted and vigilantly refresh various websites hoping that I'd be lucky enough to jump on an open spot before it was booked by one of the many others who were doing the exact same thing. At first, I couldn’t help but think, What if one of those people is in a more critical medical situation than me? I set that thought aside and instead focused on scouring for an open appointment, something I could do relatively easily because I had time and internet know-how — two more things to feel guilty about. 

After two days of nearly constant monitoring, I managed to snag an appointment in my borough that was serving those with comorbidities. My guilt persisted. But why? I was following the rules, so why should I feel bad? Although I had been the one reassuring my mother just a couple months earlier, I couldn't do the same thing for myself. So when I found out that, due to new vaccination sites opening up around New York City, I had gotten an appointment earlier than some people I know who are more at risk than I am, I felt terrible. It was just a few days' difference, but it still felt so wrong. 

The pandemic has not affected all Americans equally, exposing even more clearly the huge inequities that exist in the U.S., and that holds true for the vaccination rollout as well: There are major disparities in who has been getting the vaccine. Though Black and brown people have been hardest hit by the pandemic, these communities are getting vaccinated at significantly lower rates than white communities. Those that live in wealthy areas are also receiving more vaccinations than those in poorer neighbourhoods, and well-off white people are even infiltrating vaccination sites in low-income communities of colour. The fact that you must have reliable internet access and a flexible work schedule to even be able to book an appointment further deepens these disparities. It should not be like this. In a country where nearly all of our systems are deeply flawed, this chaotic vaccine rollout is par for the course. But, it's important to remind ourselves and others that refusing a vaccine if you qualify isn't going to magically fix this broken system — and that, in fact, you're protecting the most vulnerable people, including those who can't get vaccinated, by getting your own shot as soon as you can.

While my own hang-ups — as well as the constant, unsolicited opinions on who should and shouldn't be eligible for the vaccine flooding my Twitter feed — have made it difficult to rid myself of guilt completely, having loved ones in my corner who have pointed out that my vaccination does not mean someone else won't get it has been vital. I had been able to see that when it came time for my mother's vaccine, but I didn't feel deserving myself. And yet, what does being "deserving" even mean? Every human deserves lifesaving medical technology, just like every human deserves basic healthcare. But, deserving these basic rights doesn't mean everyone gets them, and, ironically, many of the very people who are classified as having comorbidities — whether a chronic illness, medical condition, or BMI over 30 — are often the ones who have been the most dismissed, neglected, mistreated, or even harmed by our healthcare system. There isn't much equity in our healthcare system, but this, at least, feels like a step in the right direction.

When it came time for me to get the shot, I thought back to something I'd been planning for months: a post-jab selfie. I had long looked forward to sharing an image of myself, proudly holding up my arm on Instagram. Though my mouth would be covered by a mask (or two), you would immediately be able to tell that I was smiling. Back when the vaccines first became available, I was deeply obsessed with watching videos of healthcare workers getting their shots. I gasped with delight every time I came across a photo of someone's elderly parents or grandparents with a BandAid on their bicep. Each of these posts provided me with a massive dose of hope and I was excited to eventually share my own. Now that the time had come, though, I couldn't bring myself to hit the post button. 

I did take a selfie, which I sent to my partner, my immediate family, and my best friend, as I waited the requisite 15 minutes post-inoculation. But my guilt prevented me from putting the image anywhere public, especially because I felt the photo would need extensive context. My disability is a virtually invisible one, and I was too worried about the reactions from followers who wouldn't understand why I qualified for the shot. 

My followers — anybody, really — can't tell by looking at me that I don't have a pulmonary valve. They also don't know about the PTSD I struggled with throughout my childhood and adolescence, caused by years of being poked and prodded by doctors and nurses before I could even verbalize the feelings of violation. For a long time, I was grateful that I went through a lot of the physical trauma before my memory had developed, but the truth is your body is able to remember things even if your brain can't. Those who don't know me in an intimate, meaningful way also don't know how humiliating it was for me to be a kid who couldn't play tag or pass a swim test at camp, or how painful it was to have to explain myself to P.E. teachers who accused me of not trying hard enough. They don't know that my heart condition will be a factor in some of the biggest decisions I'll make in my life, like whether or not I'll ever be pregnant. And they definitely don't know about the incalculable times I've been questioned about my experience relating to my diagnosis. They don't know about the nurses who have insisted that I'm not actually having the symptoms I'm reporting, or the doctors who haven't taken the time to familiarize themselves with my medical history — either because they didn't have time or because they couldn't be bothered. 

These experiences have left me feeling alarmed and terrified to the point of tears about what might happen to me. I've been ignored by big hospitals when I desperately needed answers. I've also been told categorically incorrect information about my health. And yet, when it finally came time to take my health into my own hands, after years of being doubted by the healthcare system, I was still left feeling guilty. I was still the one doing the questioning, and wondering how others might be questioning me. I know it should be the system that questions itself and the people who shame strangers on the internet who should be interrogating their own motives, rather than mine, but, old habits are hard to break, even as I try to do just that.

Right before my vaccine appointment, my mom sent me a series of reassuring texts, just as I had done for hers two months earlier. We discussed all the bullshit we had dealt with from those both in- and outside of the medical system. I joked that being prioritized for the vaccine maybe made some of what I've endured my whole life worth it. As the mother of a formerly sick and anxious kid, she said it definitely still wasn't, but she did concede that it was somewhat of a consolation prize. In a world where most of the people who get things first had a head-start from the day they were born, going for the gold — or silver or bronze — is usually impossible. So if you have the chance to get a consolation prize? Take it and run with it. I did. Guilt be damned.