The Past Five Years

I was diagnosed with a primary immunodeficiency in 2019. I started infusions roughly 6 months before the first Covid case was reported in my city. Before the world shut down, I had about two glorious weeks of feeling like myself, feeling healthy-ish, and feeling like a 20-something year old for once. It all came crashing down really quickly.

The past five years have changed me and my life so dramatically. It is hard to quantify or put into words just how much of a personal shift I have experienced. I doubt very many people who aren’t immunocompromised would really be able to relate to what I’m trying to describe.

See, the first couple weeks at home for most people were filled with fun new hobbies and virtual social events and the idea that we were all doing this to protect ourselves and our community. Then the boredom set in. Suddenly by late March or early April 2020, less than a year after being diagnosed with my immunodeficiency and only weeks into the pandemic days here in the US, the tone shifted. The rhetoric started to change towards “only the elderly and immunocompromised will die,” which was both inaccurate, scientifically, and shocking, personally. Some states, including my own state of residence, listed people like me as those to exclude from ventilators if there was a shortage. They were already counting people like me among the dead without even considering that they could try to save us. People made comments and actual policy decisions as if the elderly and immunocompromised already had one foot into the grave. That we weren’t human beings living full lives and potentially with years or decades of life ahead of us. People I knew started saying this among those who they thought weren’t high-risk to justify behavior that put others in harms’ way. These comments crept their way onto personal social media accounts and conversations with whoever was within ear shot. I had to listen to clients from my job ramble on about it, not allowed to speak up to say that I was one of those people they hoped would die quickly so that they could return to their social lives. It was the first season of my life I’d ever heard anyone, especially people I knew, make arguments that their social lives were worth sacrificing my life or those like me. That my life was less than. That I was acceptable collateral damage. This endured for the remainder of 2020.

Late 2020/2021: miraculously, a vaccine was made available. I was afforded some ounce of protection after close to a year of monumental isolation, though we had no way to know at the time how well my immunocompromised body would hold onto that protection. But as surely as the earlier rhetoric took hold, so too did the conspiracy theories around that ounce of protection I thought may soon come. Low vaccination rates, people acting as if nothing was going on, and extremely high rates of infection. Again, more time in isolation through a good chunk of the year.

2022/present: conspiracy theories around ALL vaccines have continued to flourish and have grown in popularity from their once-fringe spot in conversation. Childhood vaccination rates have dropped for diseases like HiB, pneumococcals, pertussis - all infections that I’ve had in the past and struggled quite a bit with as an immunocompromised individual. The willingness to sacrifice people like me has grown. More people are embracing well-known antivaxers who have been insinuating for decades that people like me ought to just be acceptable collateral damage. Even some who are well-acquainted with me and my medical history.

Now, we are reaping the consequences of those events with an ongoing measles outbreak. Tragically, a child in the US has died, and I am already hearing the beginnings of those who are trying to explain away their deaths. To justify their selfish actions regarding public health to avoid having to confront the fact that they are willing to endanger the vulnerable in our communities. Young children. Babies. Immunocompromised people like myself. It will get worse, and I fear we will go down the same path as the Covid pandemic, willingly telling immunocompromised community members that our lives are disposable.

You can only hear people you know and people you don’t speak so openly about your role as collateral damage for so long before it breaks you. Having to hear over and over again the justification for preventable deaths. If getting infections that left you struggling to breathe wasn’t enough. If having a post-viral neuropathy that affects your basic autonomic functions like your heart rate wasn’t enough. If having to worry that the next infection will give you permanent lung scarring that will shorten your lifespan wasn’t enough. If having to live in fear of the autoimmune comorbidities that can come with your condition and can also be life-threatening wasn’t enough…what will ever be enough to change their minds and make them care about how our communities protect the vulnerable? I worry that the answer is this: that many won’t care until it kills someone they know, and by then, it’ll be too late. I worry that maybe even then, some won’t care.

I sit here broken by the past five years. By having to hear, directly and indirectly, for years about how my life is disposable. I am angry and quickly losing hope for change. I don’t know how to change minds, but I hope and pray that it happens before we face more unnecessary tragedy. That the change of heart comes in time to save lives. I fear it won’t.