I remember when in March 2020. the world was told to stay home, stay quarantined and secluded, we all just needed 14 days to stop the spread and flatten the curve, and I remember how hard it was for my able-bodied friends and acquaintances to accept and live in that new world of fear that an illness would kill them.
It was strangely surreal to me because that’s everyday for chronic illness warriors and spoonies, but for the masses, it was a new kind of scary they were not prepared for and it is a scary that hasn’t ended and has turned to something toxic. I know what it is like to take my life into my hands everyday just to go out into the world and live. But we have come so far into this new world of chronic illness fear inside the entire population of the world that I think we have turned a dark and dangerous corner.
When did the idea of protecting the weak and ill and immunocompromised become the dehumanizing thing it is right now, today?
When the world first stopped, when social distancing and masking became the new normal, when virtual learning and grocery deliveries emerged as ways to keep the world safe, one of the biggest reasons everyone was told to do these things, even when they’re young and otherwise healthy, was to protect those who could not protect themselves: the elderly… the young children… the immunocompromised and chronically ill. People had socially distanced birthday drive-by parties and holidays to keep people safe. It doesn’t matter whether you think those measures were not enough, enough, or too much, we can all see that the intent of caring for and protecting the Other was beautiful and kind.
Now people are calling for those who are unvaccinated to be fired from their jobs and to be made to stay inside their homes at all times for the “crime” of being unvaccinated.
When the vaccines were first released, the frontline workers, the elderly, and those with comorbidities that made them more susceptible to the worst Covid symptoms and infections. When a small study of vaccinated individuals who died between December 2020 and October 2021 was reported on last week, the statistic that was widely shared was that the CDC reported that 75% of covid deaths were of people with 4 or more comorbidities. To most people, reports like that create two types of thinking, that either the vaccines don’t work or that it is obvious that people who have comorbidities should get vaccinated without delay because if they don’t and they get sick from Covid, it is their own fault. It is this second line of thinking that I am talking about today because it is dehumanizing and shows an ignorance of what it means to look at a patient as an individual and allow them to make the choice, with the advice of their medical team, about what is best for them.
I understand medical jargon more than the average person on the street outside of medical providers and at times, I’ve understood my conditions more than the average medical providers because I’m a rare patient with many rare conditions. I was told long ago that for me to be administered a vaccine would be for me to risk death from activating my immune response and causing a catastrophic flare. I sat down with multiple medical providers a few months ago and they, with all their education and experience, could not agree on making a recommendation for a new course of treatment for me; they are all specialists and they all know their field but my case is such that they could not come to a consensus on even making a simple recommendation on the use of a drug that is known and established as a safe-enough treatment for one of my conditions.
Yet strangers who have no medical degree, who work in HR or in the government, who work at my local coffee shop or bank, who shop next to me at the grocery store or find me online too often think they know better what I need to do to be safe than my team of doctors know or than I know. It isn’t just ableistic, and it is very ableistic, it is dehumanizing. And it is terrifying because they who believe so strongly that they know enough, who are so afraid of death, and who are grieving the death of the normal life they used to have are the ones pushing the hardest for the kinds of restrictions and policies that are dehumanizing and dangerous, things like keeping the unvaccinated locked up in their homes, guarded, held prisoner because of the “danger they pose to society” and like denying them the right to work. But before the OSHA mandate was struck down by the Supreme Court, I was afraid I was going to be put in the position of having to choose my own adventure of how I want to die because of that mandate and
Choice 1: Quit my job… And die.
If an employer requires vaccination, I can stand my ground and fight in whatever ways I can to stay employed without crossing that bridge but if I lose my job over it and cannot find another one, I will be in dire straights. My ex abandoned me when I became too disabled and too sick so I don’t have a spouse to fall back on. Getting approved for disability is not easy and it can also be time consuming and expensive: I know an amputee who was denied because the Social Security and Disability Administration wasn’t convinced the amputation of their leg was permanent. If I don’t have a job and I can’t get disability, I don’t have a roof over my head, food in my belly, or access to the medicines I need to stay alive.
Choice 2: Get vaccinated… And die.
With antiphospholipid antibody syndrome, just this one of my multiple conditions, I’m already a fail on most of the medicines used to anticoagulate and I’m on a treatment that is specifically stated by the FDA to not be used for this disease because so far it is the only one that hasn’t failed and if I do fail, I’m not sure we have anything else to try. I’m such a challenging case that when I have surgery, they forego all normally accepted changes to anticoagulation prior to surgery because I bleed more and clot catastrophically if you take me off anticoagulation than if you leave me on it; it makes no sense to even those with medical degrees, at times. If I have a vaccine, it can activate the immune response that will flood my body with the antibodies that will cause me to clot and I don’t know that there is a way to stop it.
How dangerous is this clotting? Since the beginning of the pandemic, they’ve found that almost 50% of covid patients and deaths occur when the patient has a high number of the antibodies that are the hallmark of my form of antiphospholipid antibody syndrome. I already have them. I’m precariously controlled as it is and artificially activating an immune response can activate a hellstorm of these antibodies that in my body have already proven cannot be controlled by standard, accepted, proven medical practices.
Choice 3: Just choose when and how to die to avoid the pain caused by either 2 choices.
Yeah… That. At least with this choice, I could devise a way to not go through the agony I’m already familiar with of clotting to death slowly and feeling the exquisite agony of my organs and body parts slowly dying.
When people have learned that I am not vaccinated and intend not to be, they think that because they heard a 30 second blurb from a CDC official or the White House or they read an article the found Googling vaccination and chronic illness that they’re informed enough to make decisions for me and advise me to be vaccinated. My own medical team admits freely that I exist in uncharted territory and that they cannot make any clearly confident recommendations one way or another because I’m a one of a kind patient, but strangers think they know better. I was relieved when the OSHA mandate was stopped because it meant that I could continue to live, because it meant I didn’t have to choose my own death. But in the aftermath of that decision, the vitriol and fear and anger of those who do not face my daily struggle to live has hit me so hard because after 2 years of this pandemic, even though we know we are nearing the place where it will be reclassified as an endemic, a new normal, a place where it exists more like a flu and less like a plague, I find that many of the able-bodied masses are no longer concerned with protecting those who have chronic illness, disability, or other concerns that keep them from being able to safely become vaccinated.
The intent of caring for and protecting the Other has largely disappeared and it has been replaced with the dehumanization and arrogance that says that my disability, my illness, my life don’t matter as long as you get your life back to the way you want it.
Maybe you’ve had a different experience as a disabled or chronically ill person. I’d like to hope so. If you have, please share it below. If you haven’t and you’re still struggling and just need to be seen, comment below or reach out. Right now I’m just brokenhearted and sad. I shouldn’t have to fight for the right to exist. If the science says that herd immunity should be there to protect people like me, why can’t that be good enough for society to accept that I cannot become vaccinated?