Paying The Sick Tax

When you have a chronic illness, it’s not just medical bills that are more expensive.

Steve Romenesko
Dec 1, 2019 · 3 min read
Photo of a jar filled with coins that is lying on its side and spilling coins everywhere.
Photo of a jar filled with coins that is lying on its side and spilling coins everywhere.
Photo by Michael Longmire on Unsplash

Something I see talked about a lot is how much it costs to be chronically ill, usually framed in terms of insurance. I definitely feel that — the out-of-pocket maximum on my insurance is $3,500 and, without fail, I hit it every year. I effectively make $3,500 less than somebody doing the same job I am but who does not have a chronic illness. And I know I’m fortunate to have pretty good insurance, but it still really sucks to face that realization.

But what I see discussed less is what I call the “sick tax.” The sick tax, to me, is all of the things that make life a little easier, more tolerable, or in some cases just plain livable, that aren’t obtained through insurance or by talking to a doctor. It’s the things that cost a little (or sometimes a lot) extra to pick up at the store that help out but don’t carry a prescription. It’s items you purchase to create a more habitable environment for living with chronic illness. The best example I have is when I’m prepping for a colonoscopy (something I’ve done at least 20 times):

For colonoscopy prep you’re given a big jug of medicated powder to mix with water and drink that cleans out your digestive tract. To put it lightly, it tastes pretty foul. It also carries the risk of dehydration, because you lose so much fluid. Because of both of these things, it’s recommended that you have some sort of sports drink on hand to keep you from getting dehydrated and to help kill the taste in your mouth. Whatever sports drink you buy isn’t covered by insurance or given to you by the doctor. So to prep for a colonoscopy in an optimal way and to minimize the misery, you need to purchase things on your own that you otherwise wouldn’t buy.

This example is only a few dollars — not something huge, but it’s still something. Zooming out, I also take a number of over-the-counter pills to help with chronic illness that have been recommended to me by my doctor (calcium, fiber, probiotic, multivitamin, and melatonin). Added to that are the items purchased for around my house that make life easier (dietary drinks like Boost when I can’t stomach food, keeping a stock of easy-to-digest food like saltine crackers that I otherwise wouldn’t buy, special cleaning supplies that help with a suppressed immune system) and medical devices that aren’t necessary but help me to find problems before they become much bigger issues (blood pressure machine, multiple thermometers, OTC medication to help make flares less intense).

Many of these items wouldn’t be necessary if I weren’t chronically ill. All of these things on their own aren’t terribly expensive, but all of it adds up extremely quickly. I’m privileged that this doesn’t put me in a tough financial spot, though it does take up a noticeable portion of my family’s budget. But many chronic illnesses have have a much higher sick tax — grab bars around the house to help with mobility, special beds or furniture to accommodate comfort needs, or a house with a special layout. Such expenses can very quickly cost thousands of dollars in order to create an environment where one can simply be functional.

What it boils down to is that it’s expensive to be chronically ill. There are costs associated with doctors, procedures, and medication, but there are also costs that hit you in your day-to-day life; ones that nickel and dime you every time you go to the store, that add up quickly to be a sizable portion of your budget and hit you in a way other things don’t. I always expected the expenses like co-pays, deductibles, and out-of-pockets, but nobody prepared me for paying the sick tax.

No End In Sight is a place to read and share stories about chronic illness in our own voices. You can also listen to these types of stories on the No End In Sight Podcast.

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Previously on No End In Sight — Today

Steve Romenesko

Written by

Liver transplant patient. he/him/his

No End In Sight

No End In Sight is a place for people living with chronic illness to talk about health in their own voices. We’re looking for personal stories about your experience with chronic illness. No advice, no listicles.

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