Who gets to be sick in America?

Recently I read an essay by a person with an aggressive cancer that had returned after two cycles of treatment and remission. They mentioned in the article that they had been able to celebrate the previous remission with a solo road trip of six months length. There was also a name drop of a famous author, along with mentions of living abroad, but not in the kind of foreign city with affordable rent and socialized medicine many of us are yearning for right now: this person was in a pricey European city. All signs were pointing to this person having a very different experience of cancer than most of us. The author, as it turned out, is married to a very famous person, and had published a best selling book themselves.

Trepanning illustration by Guido de Vigevano, 1345

Since my own cancer diagnosis, the notion of who gets to be sick in America has been much on my mind as a person who grew up in a low income family and has had to scrape by most of her life. I don’t mean the question is about who will get sick – an average of 40% of Americans will get cancer at some point in their lives, so it’s going to come for half of you reading this. My question is who gets to be sick as a full time job, meaning, who gets the luxury of time off when sickness arrives, or who gets to treat themselves to long trips after treatment, or who can afford the therapists who specialize in people with the PTSD that impacts 1 in 3 people who have or have had cancer?

As with everything else, being rich helps. There are the mundane things like travel to cancer centers, PPO insurance instead of HMO insurance, or really, any insurance at all. GoFundMe is overrun with people who have cancer and have lost their jobs or large chunks of their income because it is so challenging to work through the worst parts of treatment. But then there are things like private chemo rooms, nurses and concierge doctors who come to your house versus the grim beige spaces of public hospitals.

While I have a job with benefits (and if anything happens to it, I often think my best option is driving off of a cliff), getting medical leave meant enduring a patchwork process of contacting doctors, medical secretaries, department administrators, and dean’s offices. This was all happening while I was grappling with the diagnosis and starting treatment. Because you have multiple doctors as a cancer patient, you are chasing letters from multiple doctor’s offices while you’re also confronting the fact that something is actively trying to kill you and worrying about losing your job and your benefits. I opted to keep working remotely because my anxiety and depression during treatment were already dialed up to a level where I required multiple medications to make them “manageable,” and having something to do that I enjoy, which is teaching, meant the difference between total despair and partial despair. But that was a choice I had. Many cancer patients do not.

But I lost all my freelance writing income, and it has not rebounded, meaning like everyone else I have to pinch money to afford eggs and toilet paper, and my spouse works in a volatile industry where layoffs happen all the time. So the idea that I could just get in a car and spend six months driving around America thinking about my illness? Absurd. And also made impossible by our country’s lack of resources for people who are sick.

For cancer patients to qualify for disability, you either have to be in active treatment or at stage four. And even though life expectancies for stage four patients have increased, there are no guarantees. Who can afford to blow their savings on dream vacations after cancer while the rest of us are watching our retirement accounts shrivel and getting DOGE-d and AI-ed out of existence? Were I to take six months off, I’d have to work for six years to earn back that money. Or longer. And there are no guarantees about my body lasting that long.

But these kinds of experiences of leisure, relaxation and reflection should be available to everyone who gets cancer. I know the person who wrote that essay has suffered in ways I have yet to encounter with multiple rounds of treatment and the constant fear that they have not worked (okay I have actually dealt with both of those things, but cancer is apples and oranges and one size does not fit all). I am glad that they got to experience those things.

But I can’t help feel that there is something deeply twisted about the way only the wealthy can afford to be sick in this country.

Urvashi Vaid was a lawyer, writer and LGBT activist who was diagnosed with breast cancer in 2006 and died from a recurrence of the disease in 2022. In 2006, she wrote an essay for The Journal of Lesbian Studies titled “Cancer Killed the Small Talk Gene.” Here’s how she ends it:

There’s a clear need for an ACT UP type direct action movement organized around diagnosis, treatment, and care for breast cancer. But they are not organized to mobilize the anger and energy of breast cancer survivors and our families to pressure and demand an improvement in diagnosis technologies, in drug development, in standards of care and treatment, in health insurance coverage, for example.

I finally have the time to feel and to mourn now that treatments are done. I also am quite exhausted. Certainly I am relieved it is over, but that feeling is laced with uncertainty about the future. [...] Two things I feel very clear about, though: both material and immaterial things matter in dealing with cancer. Health insurance must be universal and we cannot let it be deprived to anyone. And creating loving communities around people dealing with illness is essential for anyone dealing with cancer.

Given our current political moment I don’t forsee a time in the near future where Vaid’s vision will come true. But whatever part I can play in making it happen feels ever more pressing as what passes for a social safety net in this country unravels. Just spend some time in any Reddit sub for cancer patients and you’ll hear story after story of people who had to drive Amazon trucks, carry mail, teach kindergarten and frothing $7 oat milk lattes while enduring chemotherapy and radiation, who were financially ruined by the disease even if they survived it. This is barbaric. It is the real sickness.

Whatever time I have left and whatever paltry resources I possess, I’m going to spend it reminding people of the same thing Urvashi Vaid said: health insurance must be universal. I don’t care if I to lie down and die shouting on the floor of Congress. That’s what millions of us might have to do. Eventually, perhaps someone will listen.