It’s a dynamic that’s played out on social media over the past few weeks, as more states have expanded vaccine eligibility to include adults of any age who have certain underlying medical conditions, such as autoimmune disease, cancer, diabetes, and obesity. Younger adults will post smiling vaccine selfies or share that they successfully booked an appointment, only to get bombarded with hostile comments asking why they were able to get a shot in the first place. For individuals with chronic, invisible illnesses—including but not limited to type 1 diabetes, fibromyalgia, Hashimoto’s disease, and HIV/AIDS—this judgment is not only unwarranted but also puts their lives at risk.
This policing reveals a persistent belief in American society that you can tell who is “sick” just by how they look—which shows just how much more awareness there needs to be of invisible, chronic diseases. “People have one view of what illness looks like. If you haven’t lost your hair from chemotherapy, use a mobility aid, or are in bed unable to move, you just don’t get a path,” says Nitika Chopra, chronic pain awareness advocate and Chronicon founder. “[Many people] with an invisible illness just don’t get acknowledged.”
What happens when you means-test illness
From the outside, invisible illnesses are often exactly that: invisible. But this doesn’t make their health repercussions any less serious. Many chronic diseases weaken the immune system, making it easier to catch COVID-19. Having a compromised immune system also increases the risk of having more severe COVID-19 symptoms, making the vaccine especially crucial for folks who have these health conditions.
Unfortunately, getting a diagnosis from a doctor—therefore legitimizing one’s “spot in line”—is often a hard-fought battle. With lupus, for example, it takes the average person six years to receive an official diagnosis, according to the Lupus Foundation of America. A diagnosis can be more difficult to attain for women and, particularly, women of color. Scientific studies have shown that many doctors do not take women’s complaints of pain as seriously as men. People of color similarly face more skepticism from doctors than white people.
Even with a diagnosis, American society at large also tends to impose arbitrary measures over what makes a person “deserving” of care or accommodations, which disproportionately affect people with invisible illnesses. For example, people applying for disability benefits (many of whom have chronic or invisible illnesses), must meet several strict requirements, such as proof of diagnosis and earning below a certain income threshold, if they are to receive any aid. They’re essentially forced to prove that they’re disabled “enough” to warrant help.
“People have one view of what illness looks like. If you haven’t lost your hair from chemotherapy, use a mobility aid, or are in bed unable to move, you just don’t get a path.” —Nitika Chopra, founder, Chronicon
When a person doesn’t meet society’s expectations of illness, discrimination and judgment can ensue. “One example is people who experience chronic fatigue,” Chopra says. “There are many times when they are literally too exhausted to work. But this is often judged as being lazy or irresponsible,” she says. Despite protections provided by federal law, research shows that people living with chronic illness actually expect discrimination in the workplace—which leads to stress and tension on the job.
All of these factors mean that once someone with an invisible illness is able to receive care (such as the COVID-19 vaccine) or benefits (work accommodations, a handicapped parking spot) they often face judgment from others who do not feel they “deserve” that benefit. Chopra says this is something she experienced while waiting in line to vote during the most recent presidential election. “The line was five hours long, which I couldn’t wait in because I have arthritis and was in pain, so I went into the disabled line. I heard people say, ‘Why is she in that line? She doesn’t have a disability,'” she says. “Now people with invisible illnesses are facing the same thing with the vaccine. There’s so much shame and questioning.” This shame and questioning can also be internalized, making someone less willing to seek out the health and care that they deserve.
Shining more light on invisible illness
Clearly, there’s a lot of work American society must do to better recognize the health needs of people with invisible and chronic illnesses. This community, at the very least, deserves to be taken seriously by health-care providers, says Chopra. “I hear so often from people with chronic illnesses how they have been gaslighted by their doctor, not taking their pain or symptoms seriously,” she says. “Why is it taking decades for someone to get a diagnosis?”
She says there also needs to be much more awareness and education on the realities of living with a chronic or invisible illness. “I think there needs to be a [visual] showing two people. One is on a ventilator and the other person is standing and looks completely fine. And under each person the text should say, ‘this is a sick person’ and ‘this is a sick person,'” Chopra says. “I think the government should put out posters showing that. There needs to be more education.”
In health care, implicit bias education could help providers be better aware of deeply rooted negative attitudes and stereotypes that directly affect patient care. “They are not the same, but there are a lot of similarities to gender and race in terms of how judgments and biases [regarding] people with invisible illnesses are carried out,” Chopra says.
If you’re a person with a condition that qualifies you to get a vaccine now, public health experts say to get it as soon as you can —regardless of whether you feel worthy or deserving of it. And for folks who do not fall in this category, it’s not your place to question another person’s eligibility for the vaccine unless you are their health-care provider (as so succinctly put by Darien Sutton, MD, on social media). If you’re finding yourself burning with envy or anger over a friend’s vaccine selfie, remember that there might be more going on with them than meets the eye.
As with many other major societal issues, COVID-19 has made even more clear that folks with invisible and chronic illnesses deserve more visibility, respect, and care. “There needs to be a global shift in how people talk about us and treat us,” Chopra says. “We just want to be seen.”
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