Money and Chronic Illness

In my July post, “Reimagine Work,” I wrote the following:

 "A 2019 study noted that approximately 530,000 bankruptcies are filed annually in the U.S. because of “debt accrued due to a medical illness.” That is almost 4% of the U.S. chronic illness population."

It is no secret that people in the U.S. are crushed by gargantuan healthcare costs. Knowing these costs, even if you are fortunate to have insurance, makes people think twice about dialing 9-1-1 for an ambulance or scheduling a doctor’s appointment when a new symptom pops up. These decisions are amplified when you have a chronic illness and need more consistent care to maintain a functional standard of living or, in some cases, life-saving treatment. 

That’s why the subject of affordability is only a thread in the larger conversation about money and the uncertainty of chronic illness. 

A hard pill to swallow

Since my diagnosis in 2017, I have spent a lot of time thinking about how easily chronic illness can bankrupt a person. I have read and seen stories where people living with my condition, trigeminal neuralgia, have received medical bills worth thousands—if not hundreds of thousands—of dollars. It isn’t hard to understand how such staggering numbers can cause stress, which only makes the chronically ill sicker. 

Every doctor’s visit, every lab test, every MRI, every prescription medication—it all adds up to a catastrophic amount that undeniably makes the financial toll of chronic illness a hard pill to swallow, especially if illness is a part of your life for the foreseeable future. 

Necessary healthcare

Money is a polarizing subject, but perhaps moreso when you live with chronic illness. There are aspects of any illness that makes work and the earning of money a depleting ask. But the catch-22 is that without a job—or a partner or family member who is able to support you—you are unable to afford necessary healthcare. 

It is difficult to pin down the precise unemployment rate within the chronic illness community, but I did find one statistic when I wrote “Reimagine Work” that is gut-wrenching:

"Late last year, the U.S. disability unemployment rate was noted at 9%, compared to the non-disabled rate of 3%. This number does not adequately capture what the unemployment rate is amongst the chronically ill because many do not qualify for disability benefits.”

If this statistic is accurate, it is disquieting to imagine what the true number is knowing that many chronically ill people are not eligible for disability benefits. 

It is unimaginable how the COVID-19 pandemic has further exacerbated the situation.

The choice

When you live with chronic illness, perhaps the only predictable thing about your condition is that you will be affected by it. That’s what makes traditional employment so difficult. If you are fortunate enough to be self-employed, you can build the flexibility your health needs into your lifestyle. But when you are an employee, that flexibility may only be extended to a degree. 

So the choice, then, can be distilled to this: either you accept gainful employment so that you can afford your healthcare at the potential expense of your health and wellness; or you live outside the borders of self-employment and traditional employment in an unpredictable shadowland.

This choice may seem extreme, but people living with chronic illness must confront it to some degree or another as they navigate their health. This is an ugly paradigm, but the affordability of healthcare—and a full, well-rounded life—largely depends on it. 

Something to prove

Because we live in a society that values productivity above all us, I cannot ignore the obvious associations of productivity with money and worthiness. The world isn’t always kind, understanding, or compassionate towards different health experiences, so the only way to feel seen and heard can be through the prism of productivity. 

And money is the ultimate unit of productivity.

There are real problems with this singular focus on productivity. Even for someone with a robust constitution, being hyper-focused on productivity has serious consequences for one’s self-image, mental health, and happiness. When you live with chronic illness, you are affected similarly, but when your body can no longer play by the same rules, your self-worth suffers acutely. 

I have fallen into the trap, more than I’d like to admit, of feeling like I have something to prove despite my illness. I feel like my productivity and the financial rewards of my productivity say something essential about me: I want to not only assuage any anxiety I have about being able to care for myself in the future, but I also want to prove that my life is worth something right now even though I live with 24/7 pain. I feel like I need to make a statement about my work ethic and ambition and mind—all of which are intact despite the detour my health has taken. I pay a high cost for all of this though: pushing myself beyond my limits undeniably compromises my health.

I know that I’m not alone in falling to the trap of believing that to be seen and heard and valued in this world, money is the only way to show that I am worthy. 

This is really about you

Being able to afford your healthcare is not just a matter of finances. It engulfs your overall health in unexpected ways that provokes questions. The ego may react to those questions first, but those questions uncover layers that get at the heart of the uncertainty of chronic illness.

I want you to know that you are worthy no matter your health status. You are worthy no matter your bank balance. You are worthy no matter what your productivity looks and feels like yesterday, today, tomorrow. 

You may not be able to live the way you did before your diagnosis. You may not be able to make the same money you did before. And you may be struggling on multiple fronts. When you live with chronic illness and are grappling with a barrage of often difficult practical matters, it is easy to neglect the simple fact of your worthiness because you don’t have all the big answers right now. 

The truth is you will never have all the answers. Your health will have its ebbs and flows, and you will have to adapt to those changes, whether they’re temporary or more permanent. As a person, you will change too, and that will affect how you choose to interact with the world and see yourself. 

In navigating all these changes, don’t forget that your productivity has no bearing on who you are in the present. Your worthiness is not connected to how much money you make and how totally you are able to afford your healthcare. That is a complex web that unfortunately you have to confront as a person living with chronic illness, but it says nothing about what you are capable of. 

There is no shame in your struggles. You have nothing to prove. You have already proven yourself to be strong and worthy in spite of your chronic illness because you do your best every single day.

And when you can begin to accept that, you will reveal a new view of your health experience—and yourself.