The Mathematics of Being Chronically Ill

Let’s talk about chronic illness and numbers. Some love them, some loathe them. I am somewhere in the middle of those two camps. I am a creative first and foremost, but there is something about algebra and equations that makes me… calm? Numbers, in a way, are inherently reliable. And in a life riddled with unpredictability and molehills of medical mystery, I like the cool feeling of mathematical marble beneath my fingertips at times.

To begin, let’s first discuss the numbing figures of being chronically ill that we sometimes talk about (but should do more of). It is expensive as all get out to be sick. Let’s start with the expected costs: insurance monthly premiums (which likely increase year after year), office visit co-pays for regular check-ins with specialists and primary care physicians, deductibles, the cost of daily and abortive medication, routine lab work, mental health services such as counseling or therapy for those with co-morbid conditions or the sheer need to make sense of what their body is going through (probably all of us!), MRI or CT scan imaging, and the cost of pre-planned inpatient and outpatient procedures. And then there are the unexpected costs, of which there are many: trips to the ER or urgent care, medication costs from unexpected illness such as an infection, possible ambulatory trips, the absolute abyss that is “what the hell is actually covered by my chosen insurance plan,” and so much more.

But what are a few of the lesser known facts and figures that dominate the sick life? Here are a few loose equations I’ve discovered over the past 15 years or so of dealing with multiple diagnoses.

1. One good day = two or three days of recovery. This equation can be minimized or maximized depending on the individual and how the diagnosis manifests itself. Sometimes I pay just for having a good morning, or it may take me an entire month to recover from a three-to-four-day trip despite how I was feeling on said excursion. Point being, a person that is chronically ill never gets to have a “well moment” without repercussion. We pay for every ounce of energy we spend, and that expense may not always be worth it. I think of it like being trapped in a sand timer that is constantly being flipped. The sheer act of living and breathing and existing is exhausting.

2. There is a direct correlation between the following: as you get sicker, your support system dwindles. One would think it would be the opposite, right? That as the mountain you’re forced to climb becomes miles higher, the more loved ones and acquaintances would flock to your bedside? Unfortunately, that’s just not true. And to clarify, I don’t think this is necessarily a malicious outcome but rather the result of what happens when lives naturally take differing paths. When someone’s reality is so far removed from your own, it can be hard to find common ground. It doesn’t make it right, or any less debilitating, but it’s a dichotomy worth exploring and understanding from both sides of the proverbial fence.

3. Processes that do not have a set-in-stone timeline: recovery, acceptance and grief. One of my least favorite medical-isms is the idea that it will only take an individual a set time to recover from surgery (for example, “one to two weeks”). I’ve had 13 surgeries so far in my life, a majority of which took place in the exact same location. Do you know what happens when you constantly open and close and explore the same part of your body? It takes longer to heal. Do you know what happens when you add chronic pain on top of post-operative pain? It takes even longer to heal. Each of us experience a different normal. Each of our bodies process trauma, emotional and physical, in a unique way. So there is no right or wrong or set time for recovering. Or grieving. Or accepting your circumstances. Sure, these processes could be drawn on a graph, but they will not look linear for any of us. In some ways, I suppose this is an anti-equation (not a math term, I know).

Can you relate? What did I miss? Readers, I’d love to hear your own equations in the comments, too.