The chronically ill are experts at quarantining. We’ve mastered the grief that comes with the loss of the life we once knew. We’re comfortable and familiar with the concepts of rescheduling and cancelling. Our vacations, our jobs, the not being able to see our friends or family, or start a new career or go back to school or get married or have a baby – have all been postponed for “another time” when we “feel better”.
But when those times don’t come, the personal sacrifices and suffering begin to overflow. Some of you may be experiencing for the first time what this kind of life feels like. Living without an end in sight is agonising, and not knowing how or when you’ll feel better or be able to do the things you love is a harsh lesson in relinquishing control. For chronic illness doesn’t relent, and neither will a virus that we allow to spread rampantly.
However, and unlike the virus, the chronically ill are not society’s first concern. There isn’t an urgency to fix us. Or to treat us properly. There aren’t daily press conferences and scientists racing the clock for a cure. And it’s not because we’re not infectious. It’s because we’re not a priority. We’ve never been.
Almost all chronically ill people have a similar story (although Black and non-white folx have disproportionally worse stories). Myself and members of the endometriosis community will see dozens of doctors that dismiss our symptoms and gaslight our experiences leading to more disease spread, and subsequently more physical and emotional damage. To finally after years of searching (sometimes decades), an extraordinary amount of money and a handful of failed treatments and medications with horrific side effects later – we find a doctor who gets it.
They diagnosis us. They come up with a plan of care, an excision surgery – the gold standard treatment, that isn’t a cure (because a cure doesn’t exist) but it’s the next best thing and it promises relief. This surgery comes with tons of risks and months of recovery, but it’s the moment we’ve been waiting for. First though, we get in line and patiently wait our turn. And that line is long y’all.
But now, that line just got even longer.
Hospitals around the country are overspilling with COVID-19 cases which means treatments for the already sick are being cancelled. Those “elective surgeries” – that’s us. That’s me. Yes, our medical treatments are being cancelled. Read that again. Take all the time you need.
And if we’re not waiting for a surgery, we are surely waiting on some kind of care that’s been postponed. We’re having virus-related delays in seeing our doctors at their offices. And we’re having virus-related delays in getting the ultrasounds, imaging, blood work and physical therapy that this disease requires from us.
This care, and these surgeries, allow us to live (mostly) pain-free lives. They allow our bodies to (sometimes) carry and conceive children and heal us from infertility. And they allow us to be (more) active members of our community instead of bedridden shells of past selves.
I use a cane now. I cannot get out of bed, off the couch or from a seated position unassisted. My husband gets me dressed in the morning. There isn’t a second of the day that goes by that I’m without physical pain and discomfort. But none of that even matters, because the emotional pain of knowing that I can’t start another fertility treatment until after I heal from my next surgery is the rawest form of torture I’ve ever endured.
My surgery was originally scheduled for June 24 and postponed to July 22 and then to August 3 and then to…? You see, nothing about this situation is secure and as long as COVID-19 continues to inundate our hospitals, my health will continue to be in flux.
So, please wear a mask.
Every time I hear someone say that they’re “not afraid of the virus” or “not gonna die if they get it” or “we can just stay home” my soul cringes. Because for many Americans this is about life or death. And since we’re on the subject – when did our moral baseline become whether or not someone will live or die?
This is about being scared of the virus. And not whether or not we’ll get it – because we probably won’t we’ve been in quarantine remember? But because we can’t afford for you to get it. And when you say things like that you’re diminishing our very real and legitimate health concerns.
There is a lot we don’t know about the virus, but there’s some stuff we do know. We know that carriers can be asymptomatic and highly contagious. And we know that face masks work. And we know what happens when we don’t wear face masks. We shut back down and our hospitals become overwhelmed – which is happening right now in my state. Hi, hello, Texans is this thing on?
Masks give us a chance to carry out some kind of normalcy again – whatever that may look like for you and your family. For me that means a chance of having my third surgery in two years, being able to sit, stand and dress myself unassisted, and another chance at conceiving and carrying a child.
Life is really hard on all of us right now. But it’s especially hard on the chronically ill, and other vulnerable populations like the elderly, immunocompromised, Black and non-white folx (p.s. If you put up a black square but don’t wear a mask, your performative allyship is showing). If you wear a mask, thank you for doing your part. If you don’t, please reconsider. It won’t be like this forever, I promise.