As the world begins to reopen, please remember your chronically ill friends
Updated: Jun 10, 2020
by Michelle Iracheta
On a recent Monday, I woke up early, spent an hour scrolling through social media on my phone and then reluctantly rolled out of bed. I took a handful of pills, downed a glass of water and made my way into the kitchen to pour myself a cup of coffee, black. And then, I began another day – one of dozens— working from home.
I had just begun working on a project after days, weeks, months of feeling unhappy and sidelined by despair. I had finally found an ergonomic office and desk arrangement that was sufficiently tolerable and working from home was fast becoming the new normal.
No, my new work arrangement wasn’t because of the recent Covid-19 pandemic that has forced many employees to set up their home offices and figure out how to log in to their jobs remotely. I, along with many others with chronic illnesses or disabilities, have long been advocating for working from home due to the physical and emotional limitations that often accompany our illnesses.
While many of us have been working from home in some capacity for months – maybe years – and restricting our activities to adapt to our bodies, the entire world is now right there with the us, stuck inside their homes, unable to do normal, human things that they once took for granted. And for a moment, the world has gotten a glimpse – even if just for a little bit – of what’s it’s like to mourn the things they lost because of an illness.
Gov. Greg Abbott recently announced the next phase of reopening Texas; most businesses can reopen at 50 percent capacity. For some in the state, the news comes with relief, excitement and hope that we may finally be able to get back to our lives. And as the world begins to reopen, those of us with chronic illnesses and disabilities can only look on with sadness, envy and sorrow, because for us, a lot of the world is still off limits.
I have endometriosis, complex-post traumatic stress disorder and unrelenting chronic pain, as well as slew of gastrointestinal conditions. The pain in my body comes in waves, starting in my lower back and vibrating down my legs and up to my neck, burning like acid repeatedly being poured on my spine. Some days I just lie down and hope for it to subside. On the bad days, I’ll forgo work altogether and lie in my bed writhing in pain. The constant struggle feels like I’m climbing up a mountain, without rope, gear or an ascender, warily minding my foot placement and hoping I don’t fall to an almost certain death.
Under the supervision of my doctor, physical therapist, chiropractor, or personal trainer, I stretch and twist my body like an out-of-practice contortionist. On the good days, I carefully decide what activity I’ll take on, always fearful that doing too much will cause me to slide back down that mountain or miss a step altogether. I never make it to the top and I’m perpetually starting the climb again.
Like many people with a chronic illness or disability, I am afraid that once the world reopens, it will leave me and people like me reeling in social isolation or at a disadvantage, as everyone returns to more traditional forms of connecting with one another and discontinues use of methods that don’t require in-person work or communication. Methods that their non-disabled minds quickly mastered to adjust to the new and changing world. Methods that have, for the most part, always been around; employers just refused to allow them, including for people with disabilities.
Before the world was catapulted into a lockdown, an invitation to go outside our perfectly accessible-curated homes, might have shot us into an anxiety spiral. If I go out, will my body cooperate? If it does, how long will the recovery take? Hours? Days? A week? Longer? And finally, will my friend or employer understand when I say I can’t go out tonight or that I won’t make into the office today?
I’m happy that my friends and family have all found new ways to communicate with me more, and since the pandemic hit, they continue to stay in touch. That’s something I don’t want to go away.
It only took a global pandemic for people to understand what we have been saying for years; working from home is possible, albeit socially isolating. And now that everyone knows that, it’s time to acknowledge that this is the reality for many disabled and chronically people.
Twitter and other tech companies recently announced they are letting their employees work from home indefinitely. Other employers should follow suit.
Michelle Iracheta is a Houston-based writer and EFHou cofounder.