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The Extra Money We Have to Spend to Get Through a Day With Chronic Illness

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If you are not in the chronically ill population, I bet you get annoyed when you have to go to the doctor for a sinus infection, or the flu, or something fairly typical, and you have to pay a co-pay and then maybe a portion of your prescription. You miss a few days of work and you may or not may have sick time, so your paycheck might get docked. If it’s something more extreme like a broken bone or pneumonia, it really starts adding up!

But you don’t have to pay for extra supplements that help make you feel normal (whatever “normal” is), and you don’t have to buy particular accessories to help you get through the day. Those of us who have ongoing illnesses spend so much money on trying to feel OK.

For example, I am experiencing hair loss right now. I have a $25/month supplement right now, but it’s not working, so I’m looking at one that was recommended to me that’s $60/month. That’s specifically for my hair, which is half the volume it used to be, and it’s always been thin. I also have supplements for dry skin, adrenal function, and then regular run-of-the-mill fish oil. All of this adds up to about $70/month, before the more expensive option for my hair, which would bump it up to just over $100/month. Believe it or not, this is a small amount compared to what others spend.

Because of back pain, I have heating pads stashed everywhere. That back pain is often pretty bad, so I can’t just bend over, move the furniture and unplug it. It’s just so much easier to have one at my office, one on my bed and one for my couch. So I have three heating pads. Going for $20/pop, I’ve spent $60 on heating pads. My job requires that I move around from day to day, so I don’t spend that much time in my office. This means that I get the disposable heating pads, as well as the lidocaine patches. They usually go for $5-6 for a package of three patches. Even if I use them carefully, I end up going through at least a package a week, so now we’re up to $20/month in disposable heating packages.

I have met my out of pocket max and my deductible for the year (anybody care to guess how much that was, because it’s a lot) so my prescription medications are fully covered for the year. But I can’t always take prescription medications to control pain because the side effects can cause drowsiness. During the day, I just can’t afford that most of the time. So let’s say 50 ibuprofen, the generic brand, costs $2 and 50 acetaminophen costs $3. That’s 12 doses of ibuprofen and 25 doses of acetaminophen. If that lasts a week, (during a flare, this is a generous assumption) then we’re at $22/month, plus another $5 for the Pepcid to help with inevitable upset stomach. Approximately $30/month in over-the-counter pain killers.

For a disease that causes unpredictable, or heavy, menstruation, then it’s necessary to stock up on tampons and maxi pads and pantyliners. This is easily $30/month as well, because a box of tampons is $5 or so, and it might last a week, but it’s usually less than that, five days maybe, so it would be more like six boxes a month.

Eating well genuinely makes a difference in how I feel. So I pack my lunch, and I cook a lot. I don’t eat $1 frozen pizza (even though I miss it because Totino’s is delicious). So my grocery bill reflects quality produce, dairy, whey protein powder, eggs, coconut and almond flours, and nothing at all processed. So a quick sandwiches with chips? I don’t get to do that. I make my bread with gluten-free organic ingredients. A bag of regular all-purpose flour is maybe $2, but a bag of coconut flour is $4 and almond flour is more than that. Every meal has to factor in this consideration. I don’t remember what my grocery bill was before, but it’s about $400/month now. That’s just for me, as my husband travels during the week. I think it used to be $160/month. I averaged about $40/week. That was back in my Totino’s Party Pizza Days. I don’t know how to factor groceries into the overall monthly expense of chronic illness, but it’s significant and bears discussion.

We also have to take care in our clothing. The bottoms of my feet often ache so I can not wear cheap shoes. My daily flats cost $200, but they’ve lasted for two years and still have a lot of life left. My weight can easily fluctuate 10 pounds overnight, so I have clothes in two different sizes so that I always look put together, instead of looking like my clothes are baggy and unprofessional. There are so many diseases that cause foot pain and weight fluctuation. This is really common.

Let’s talk about hardware. Being chronically ill will take a toll on your senses. Being estrogen dominant can change the shape of your eyeball, so glasses are almost a given. Certain autoimmune diseases causes hearing loss and insurance often doesn’t cover it. The last one I saw cost $2,500 but my coworker spent $4,000 on hers. Then, TMJ or generalized anxiety (or a million other things) causes jaw pain, so then we get a retainer too, and dental insurance won’t cover all of it. There are more “accessories” — special bras that go for $100, back braces, ankle or knee braces, it goes on. There are so many things that insurance doesn’t cover, but we have to have it, so we have to spend our own money on it.

So there you have it. Those are the items that I, personally, have witnessed and dealt with. It adds up. Remember that these are things that insurance doesn’t cover, so this doesn’t include co-pays, prescriptions, whatever insurance has worked out (usually a percentage of the procedure or blood test or imaging or whatever is ordered).

So we’re not just struggling with feeling bad or adjusting to the “new normal” that we’ll be adjusting to for the rest of our lives. We’re also spending a lot of money, and missing a lot of work in the meantime. It’s hard to be chronically ill, and it’s expensive to be chronically ill.

I’m interested in anything I missed. Please point out your expenses in the comments. Let’s be really thorough here for the sake of family members and friends who read The Mighty.

Getty photo by Pablo_K

Originally published: September 9, 2018
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