Send Me More Stories About Chronic Illness
Nothing about my routine changed when coronavirus hit. Because of my chronic illness, I was prepared for the COVID-19 outbreak before it ever happened.
Masks, Lysol wipes, and a gallon of hand sanitizer from last flu season already sat stacked in my bathroom cabinet. While others scrambled for groceries, I already had several weeks’ worth of health meals in my freezer, which I cooked ahead of time every month because of the unpredictable bouts of chronic fatigue which can make daily cooking difficult. And while friends on social media panicked over their sudden loss of income, I had a rainy day fund set away, knowing my disease sometimes makes me too sick to work.
I thought all of this planning would keep me safe and healthy through the pandemic. What else had chronic illness prepared me for than to deal with this? But all it took was one news article for me to realize that the fortress I thought I’d built around myself was nothing but a straw house.
At the end of March, a woman with my disease (lupus) was refused a refill of life-saving medication because it is suddenly in high demand. Since the COVID-19 outbreak, chloroquine, a medication taken by the majority of lupus patients, has been touted by the president and others as an experimental treatment for COVID-19. There is scant evidence available right now that the medicine actually helps coronavirus patients, and in many cases, it may make their health worse. Despite this, the woman who was denied her life-saving medication in the form of a letter from her insurance company. “Thank you for your sacrifice,” it read.
Sadly, I wasn’t surprised to read this. People living with chronic health conditions are used to having their lives undervalued by the able-bodied. It’s okay to sacrifice us, as long as ‘real’ people aren’t inconvenienced.
It’s an attitude that has been writ large during the COVID pandemic. Consider, for example, how at the beginning of the crisis, people comforted themselves that they were safe from coronavirus because “only the elderly and those with underlying health issues” will be affected. As if our lives were worth less, because we’d suffered more. And as if the weren’t over 1 billion people in the world with chronic health issues.
At the beginning of the crisis, people comforted themselves that they were safe from coronavirus because “only the elderly and those with underlying health issues” will be affected. As if our lives were worth less, because we’d suffered more.
The American government and health insurance companies have demonstrated in the past they are all too willing to sacrifice the most vulnerable among us. Just look at the Virginia Sterilization Act of 1924, the opposition against the Americans with Disabilities Act, or the attempted repeal of the Affordable Care Act and its coverage for those with pre-existing conditions. America has developed a clear set of instructions for discriminating against the chronically ill: distinguish disabled Americans from “regular” Americans. Blame the sick for their poor health. Then claim that sacrificing the sick is for the greater good.
This is the recipe for marginalizing the chronically ill and disabled. And it’s being followed right now. Yes, we need to stop the spread of this horrible virus. But do we need to trample the chronically ill to do it? How is a life lost to COVID-19 any different than a life lost to lupus?
As a chronically ill woman, I read the news on COVID-19 and access to hydroxycholoroquine with diminishing hope. My disease is severe, attacking internal organs like my brain and central nervous system. I have survived brain inflammation twice. The second time, I was bedridden for eight months and in a wheelchair for a year. I’d like to think that my determination and wise decision-making saved my life. But in reality, what has truly saved my life is access to medication.
I’d like to think that my determination and wise decision-making saved my life. But in reality, what has truly saved my life is access to medication.
Even with the handful of pills I take each night, including hydroxychloroquine, I don’t live a normal life. I sleep ten to twelve hours each night and wake up tired. I can’t work full-time or in the mornings, when the fatigue is at its worst. I keep a daily record of symptoms to try to prevent myself from tumbling back into the abyss of brain inflammation. Medication doesn’t give the sickest among us a normal life. It gives us life. Period.
I try not to take the restriction of medication I need personally. Rationally, I don’t believe that lawmakers in Washington or insurance CEOs are plotting my death. More likely, they probably don’t see people like me at all. When you never experience chronic health issues problems, it’s easy to look past them. It’s easy to forget that every morning, there are people who struggle to get out of bed, who have to rest after showering… who walk the tightrope of staying healthy everyday.
When Americans think of the chronically ill, I hope they picture me. A woman who loves to read novels while snuggling with her dogs and drinking Rose Lychee bubble tea. A teacher who worries about her students and can’t wait until she can see them again. Someone who tries her best, even when the odds seem stacked against her.
And someone who values her own life, every bit as much as they value theirs.
