When COVID-19 Blows Over, Please Remember People With Chronic Illnesses
In the midst of the coronavirus (COVID-19) — the new-to-humans coronavirus that causes respiratory infection and can lead to serious or fatal health complications — pandemic, I’ve seen a flood of Facebook posts from healthy, abled individuals. Posts filled with the words = “This isn’t that big of a deal,” or “They took away our sports,” or “I am soooo bored,” make me roll my eyes as someone who is chronically ill, disabled and immunocompromised.
To those who are healthy and have said any variation of the quotations listed above, I invite you to continue reading this. In fact, I challenge you to read this in its entirety. I hope at the end, I can ease your mind and give you a new perspective on life.
With that said and after giving it a lot of thought, I would like to be the one to welcome you to an alternate universe, one you may not have given much thought to until the recent, very unfortunate events that have transpired throughout the past few months. I would like to welcome you to our world: the world that those with chronic illnesses of all kinds, disabilities and immune suppression have been living in for years on end.
Welcome to our world: where isolation is a way of life. We live in the confines of our home, bedridden. Some of us have had to live like this for months upon months, and a lot of us have had to live like this for years upon years.
Now, you are forced into isolation because any trip into the outside world has the potential to severely impact your health, and even worse, kill you. You become a permanent fixture in your home. Your bed and couch may have sunken in to the shape of your body after laying in it for days on end. But not by your own choice. Who really wants to be bedridden?
This is what life is like for those of us with chronic illnesses and disabilities a lot of the time. The choice to remain home isn’t made by us, but by our chronic illnesses. We watch life go on from our windows. We watch as our neighbors leave for work, we watch our kids playing outside without us present, and we hear the music and laughter from the neighborhood barbecue. We can only imagine what it would be like to live a “normal” life, where there are no boundaries between life and flares, life and hospitalizations, or life and major setbacks.
Welcome to our world, where the world continues to go on whether or not your own personal world has been at a standstill. Ever wonder what happens after you receive a life-altering diagnosis? Or what happens after you have a near-death experience? How about what happens after you are dealt with a disability that changes the whole course of your life? I will tell you, based off of living through it: life goes on. There is no outpouring of community, and no newsworthy headlines of people coming together with helping hands. A majority of people will care, but not enough to stay by your side.
Welcome to our world, where shut-off notices pile up on the countertops. Where bills stack up high, with no funds left to pay them. A world where chronic illness has bled funds dry, leaving nothing left to survive off of. There are no cheap airline tickets, no vacations and no luxuries in our lives. Not having financial means to survive is panic-inducing in itself, but it is just another way of life for those of us with chronic illnesses and disabilities.
Welcome to our world, where the refrigerator is bare and pantry shelves are empty. Where stomachs go hungry. A world where the entire family goes hungry. Where rationing has been no new way of life, but an absolute necessity. Where chronically ill parents are too sick or weak to prepare meals and have no money to pay for takeout meals. Where chronically ill children have no desire to eat, but when they finally do, have no food to eat. Where sons and daughters go to bed without eating a dinner that their parents can’t afford to provide.
Welcome to our world, where we go without basic necessities. Where we go without food, drink and coveted toiletries. Where neighbors and family do not care to see if you can get to the store. Where you are degraded and seen as a burden to society, as just one more thing to be added to a “to-do” list, and therefore too much of a responsibility. Where no one posted about checking on your chronically ill family and friends up until it finally became the “right thing to do” by social media’s standards.
Welcome to our world, where it gets really quiet. Where laughter and liveliness does not fill the confines of our homes. Where the ambiance is somber and dull, and only echoes of pain could be heard. Where silence becomes bone-chilling, yet a reluctantly accepted part of your life.
Welcome to our world, where we cannot get to our doctors. A world where you are lucky if your doctor can see you for your legitimate medical problems, that may even classify as an emergency. Welcome to the life of having to grin and bear debilitating symptoms, and the surge of fear you feel when you are unsure if this will be what kills you.
Welcome to our world, where nobody cares if you survive or not. Where society doesn’t care if you have any of the above luxuries, whether you sink or swim, whether you live or die. A world where your neighbors see your car parked in the same place in your driveway for weeks and months at a time, and never think to call to see if you’re okay.
Welcome to our world, where we go without medications and the medical care we need. Where insurance doesn’t care if the medication your life depends on is covered or not. Where everything you need to keep your body running is too expensive. Where parents can’t make their sick children better. Where sick parents don’t know if they’ll be alive to see their children through their milestones. Where patients with central lines go without new access needles, dressing kits, and the nurses needed to help care for them. Where as sick as you are, you are still taking a backseat. A scary world where you wonder how much you will deteriorate before a new medication is affordable or accessible.
Welcome to our world, where you are forgotten. Most of us go without family and friends who care about us. Most of us haven’t had visitors in months, even years at that. Where you are completely alone. A world where your phone does not ring, and your message inbox remains empty. A world where quarantine isn’t 14 days, or a couple of months, but an unfortunate lifetime. A world where your health dictates your every move and decision.
Welcome to our world, where you have to stay home from work, take unemployment, or completely give up the career you’ve worked so hard for. Chronic illness and disabilities do not care if you went to school for a masters or doctorate degree. It does not care how many late nights you’ve spent working on accomplishing that goal. A cruel world where high school or college students have had to drop out as a necessity due to their failing health. A world where teachers do not come together to alter their lesson plans for those kids that are chronically ill and disabled, leaving them behind. A world where “work from home” is never an option while you battle your illnesses from the confines of your home. A world where everything you worked so hard to obtain, is left to fall apart and go up in smokes. Your means to survival, your paycheck, your financial security, is no longer existent. Hobbies become too difficult to partake in, and gym life becomes physical therapy for your atrophying muscles that insurance refuses to cover. A life where the big unknowns becomes a part of your daily existence.
Welcome to our world, where we forget what day of the week it is and the date, after living like this for so long causes each day to blur into one. Where watching Netflix all day isn’t romanticized, and being awake all hours of the night with insomnia isn’t just a meme.
Welcome to our world, where we go without. Where we are no stranger to the darkness and loneliness that comes along with being the “outcasts of society.” Where we are not seen or heard. Where we are left to rot and die, while society goes on with their fancy gym packages, eyelash extension appointments and baylayage hair. Where we fade into the background slowly over time, while our suffering is silenced by society. Where we have been accustomed to rationing food and basic necessities, while society shared their fancy brunch and dinner pictures on Instagram. Where we are all too used to being unable to afford the costs of daily living and being physically unable to work to provide for ourselves and our families. Where your boredom and our daily lives meet in the middle, yet don’t make eye contact.
The next time you say you are bored, I hope you remember this. When this is all said and done, I hope you remember this. When the quarantines are lifted, and you are able to go out in public and feel the fresh air and sunshine on your skin, I hope you never forget how you felt during this time. When COVID-19 becomes a distant memory for all of society, and you are privileged enough to go back to your normal life as you had always known it, I hope that you remember a time where you had to go without. I hope you remember those of us who aren’t as lucky — those of us who welcomed you into this unspeakable world, and the time when both worlds of the healthy and sick became one.
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Getty Images photo via Jorm Sangsorn