The Relentless Cost of Chronic Diseases

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Written By Robby Macaay

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At first, my legs buckled. Then I started nearly fainting and was struck by fierce jaw, neck, and back pain—six unhappy faces-worth on the scale.  Just as quickly, as one tends to do, I created narratives to explain these sudden symptoms. That one glass of wine had done me in. The steamy weather led my knees to wobble. It was the aftermath of a concussion I got after I fell in a hole in the sidewalk. It was from when I hurt my neck when I was thrown down on a subway platform by a man with low spatial awareness and somewhere to be.

It turned out I was fainting because I had gotten COVID-19 for the second and then the third time and now had Long COVID, although it took six months for the doctors to arrive at this conclusion. It seems I had fallen prey to what I call “gray diseases”—the post-viral, hormonal, autoimmune or psychological conditions like PTSD that have unclear shapes, multiple possible cures, or no cure at all. (In addition to Long COVID, think Lyme, endometriosis, and chronic pain.) After months of waiting in agony during which I couldn’t work at my ordinary pace, I realized that my experience was not separate from my work as the director of a poverty reporting organization but referred back to my job explicitly. In fact, I was standing directly in an area of inequality that receives too little attention: the sheer number of people with gray diseases that aren’t getting the care they need due to their economic status. (For Long COVID alone, a recent CDC report says that 6.8% of Americans having recently noted having symptoms of the disease while 17.6% say they’ve had long COVID at some point.) I was personally lucky enough to have certain safety nets that allowed me to manage my condition. I was given all the paid medical leave I needed.

And then there’s the economic cost once you have these diseases. An estimated two-thirds of people with rheumatoid arthritis tend to be unable to work full-time. In a 2023 study by published in JAMA “The Association of Post–COVID-19 Condition Symptoms and Employment Status,” researchers found that people with long COVID are nearly 1.5 times as likely to be unemployed than those without, or one in eight is out of the group surveyed.

Even before my diagnosis I was no stranger to the economic dynamics of gray diseases, having written about similar issues faced by dozens of sources in my books, and having worked with several writers at the Economic Hardship Reporting Project who’ve written directly about their experiences. The reporters include Anne Elizabeth Moore and Alex Miller. Despite being a Navy veteran, Miller, an EHRP fellow, still couldn’t get adequate help from the Veterans’ Administration for his PTSD and housing, even after living on the streets. I was struck by how he much he had to enact his suffering in order to get the help he needed, that his own account was disbelieved and he was stonewalled by those in power. And this lack of care can extend further up the income gradient as well. Even as a relatively privileged middle-class person, I have waited for month for appointments to see doctors and in many of their medical rooms, I had to perform the reality of my condition anew.

Read More: The Isolation of Having Long COVID as Society Moves On

At each medical appointment, I’d tell a new recommended specialist of the postural orthostatic tachycardia syndrome that arrived out of nowhere, which was why I was as close as possible to fainting dozens of times, apparently, in itself, part of the post-COVID syndrome. (I nearly fainted once in the Metropolitan Museum and the whole room went gray: it was like being in the children’s book, The Mixed-Up Files of Mrs. Basil E Frankweiler, where 1970s kids wind up in the Met overnight, sleeping on the beds of ancient aristocrats.) I was sent to a neurologist and an optometrist and a dentist, an ophthalmologist who turns out to specialize only in eyelids, as if she was NYU Hospital’s resident surrealist. I told them of pain reaching a seven and sometimes they didn’t seem to believe it, as the blood tests were unremarkable. All in all, I hated going to doctors because the sick role was not one I had auditioned for: none of these specialists had known the “me” I was before I became an unwell person.

When I asked Moore about her medical journey, she told me about the six years of pain caused by diseases that were as of then unnamed. Back then, in the late 2000s until 2014, she was uninsured and her earning regularly put her near the poverty line, so it was hard to go to doctors in the first place to get answers about what appeared to be autoimmune conditions, or to get to specialists.  (The apparent insolubility of these problem can cause discomfort in others, with lots of people try telling you, in so many words, that it’s  “all in your head.”) Moore’s experience reminded me about a facet of gray diseases I was becoming aware of: that women are far more likely to suffer from multiple chronic conditions than men, and gender does appear to play a role in the attitude towards and analysis by medical professionals when diagnosing. In addition, the poorer you are the likelier they are to haunt you for long periods.

For example, the situation only changed for Moore when she got full coverage under the Affordable Care Act in 2014. She got diagnosed with multiple autoimmune conditions that had caused her chronic pain. “You work really hard, can’t eat food, and will never make any money, and then get sick from all those things,” Moore says, of her existence. She is now on “an enormous volume of medication” but can’t afford more costly help from alternative sources that aren’t covered.

For Nicholson, the disability and pain activist who has lived with chronic pain and injury that was so bad she couldn’t stand or walk for 20 years, the general “pull yourself up by your bootstraps attitude,” as she calls it, applies heavily and negatively to how Americans are taught to consider their own health, especially if they have diseases that have nebulous origins and symptoms. If you add poverty or economic insecurity to the mix it only worsens the outcome. “If your provider doesn’t see themselves in you, they will encourage you to feel shame and blame,” she says. “There’s a false belief that people with these gray conditions you describe are takers and fakers not makers, or are simply trying to get out of work.”

What are some fixes that might ease the economic freefall of these sufferers as well as the stigma and disbelief that tend to trail them? What might help them access greater wellness and greater equity around their healing? To start, we need to give employees substantial medical leaves for all illnesses and disability pay if needed. We need to recognize these “gray diseases” can be exacerbated by fatigue and stress which are experienced more intensely by people who are lower income and doing low wage work. (They are also altered by the seismic hormonal shifts that happen to women more than men, from monthly cycles to pregnancy and menopause.) We must take these sometimes-invisible-seeming diseases seriously, and not assume those who have them are malingering. Senator Bernie Sanders has just recently started to devote energy to a campaign around just this in terms of Long COVID. If we don’t, the consequences can be grave. As Moore says, “The number one cause of death for people with these difficult-to-measure diseases is suicide.”

Read More: She Owed $227,000 in Medical Bills—Even With Insurance. Here’s What it Took to Pay Them

We could use a branding campaign to raise awareness of these conditions and how they tie into class and racial injustice. Data from the CDC shows that the Hispanic population was most likely to have had or currently have Long COVID and Black and Latino Americans are also more likely, however, to experience the symptoms of Long COVID. There’s one ad I noticed recently, on New York City’s bus stops in late 2023 and early 2024, from Advil and the Morehouse School of Medicine. It featured a Black woman and face and the legend, “Believe my pain,” and advanced the term “pain equity.” It would be great if these attempts at raising awareness didn’t just come from drug companies trying to push products. What we need are grassroots campaigns with a similar message, similar to the activism of AIDS patients in the 80s, who fought to be taken seriously and for concrete policy changes that could save their lives, or the Patient-Led Research Collaborative today.

We also need to fund more programs like NYU’s Post-Covid clinic, which I wound up finally visiting recently, and not just for conditions like post-COVID but the vast number of people with chronic pain and other “mystery” diseases that make it hard for them to work. There, I was greeted by a nurse who didn’t roll her eyes or express confusion at my symptoms. They accepted Medicaid, as did Mount Sinai’s center, making them relatively accessible for people all along the income gradient, although the waiting times are considerable. They offered a set of ameliorative medications. They included certain vitamins and minerals—Nac and CoQ10—as well as 10 days of Paxlovid, the retroviral (one of the two drugs in it is also an HIV drug) typically used for five days for regular COVID cases. On the one hand, the antidotes seemed a little bit of a medley. On the other hand, the salves they offered were affordable: this would be welcome for the many sufferers who didn’t have the means to purchase costly medications, massages or out-of-network doctors.

The affirmation I received at the clinic was itself a tonic. We need this kind of accessible, patient-centered care everywhere, not just in New York City but also in the hospital deserts that have arisen around the country. As the doctor at that NYU Clinic told me, “Let people know we are here if they need us.”

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