ProPublica is doing a story and was asking for these on Bluesky at least. Wanted people to share their stories.

A friend of mine was feeling ill, but didn’t go to the hospital because he couldn’t afford it. Once the leukemia started advancing though he only lasted a week.

There are far worse out there, but about a year ago I injured my hand somehow. I couldn’t close my fist, which made it hard for me to work and support my partner as I do a majority of the cooking and chores. I couldn’t make a firm enough grip to use cast iron cookware. I was really concerned about this for a number of obvious reasons, so I went to the doctor.

I looked up an in network doc, call them up, confirm they take my insurance, double check that the kind of care I was looking for was covered. At my appointment they ask to do a physical as well, since I was due for one. During that they asked all the normal questions, the poignant one here being “do you smoke?” I replied “I have one or two cigarettes socially when drinking with some friends, which happens maybe once every other month or less.” This changed the tone of the entire visit.

My concern about my hand was largely disregarded and the doctor began talking to me about smoking cessation and the dangers of tobacco. Gave me pamphlets, tried to ask if I’d consider quitting, asked if I’ve tried alternatives. I tried to turn things back to my hand and she wasn’t interested. After I strongly insisted that was my sole medical interest, she gave me a referral.

I pay my copay up front and leave. I go to the specialist a few days later. He looks at my hand for 45 seconds and gives me a wrist brace and tells me to sleep with it on. I pay my copay and leave. Wouldn’t ya know? That did it! My hand was working again.

I call the specialist to follow up on his care and say it worked well. He told me I need to speak with billing to settle my bill. I’m confused. Wasn’t the copay for that? He says the insurance covered the visit but not the medical device (the wrist brace). So I check with billing and they want four hundred dollars. I’m flabbergasted. I check where they got the product, because surely it couldn’t cost that. I found the identical product, brand and all, on Amazon for $13. I’m livid. I argue with them, they say they can’t do anything.

I call the insurance and they say my policy was clear about specialists and medical devices. Dejected and feeling stupid, I just pay.

About a week later I get a call from the first doc saying I needed to settle up as well. I owe them five hundred dollars!!! How?? They say the bloodwork they did wasn’t covered. I plead saying that’s a normal part of a physical, no? They say yes, but I didn’t come in for a physical, according to the billing, I came in for a smoking cessation meeting!!

I tried for weeks to get the doctor on the phone to rectify this but they wouldn’t speak to me. My insurance company said they didn’t cover bloodwork as part of that and the doctors office wouldn’t change the billing.

I’m sick of doctors, I’m sick of insurance companies. If I get sick, I make chicken soup, drink tea, and scarf OTC drugs. I sprang my ankle fishing earlier this year. Did I go to a doctor? Absolutely not! I can’t afford a $900 bill every time something goes wrong.

I pay $360 a month for this. Thankfully I make enough that this wasn’t so damaging on my life, but I stopped buying as much meat and ate mostly beans for a year and didn’t travel for my vacation. I had been hoping to visit my father across the country that year but we had to put it off. It changed my outlook on medical services drastically and I’ll never be so honest to doctors again.

My husband was diagnosed with ulcerative colitis in his early 40s. There was a medication that kept his symptoms more or less in control.

Then he lost his job. The meds ran out and it turns out they cost thousands of dollars without his work insurance plan. This was just before Obamacare, and there was no way we could afford unsubsidized insurance for him on my salary.

His colitis got exponentially worse, and was treated only spotadically when I could scrape together a few hundred dollars for the doctor visit, where he might be able to get enough free samples of the med or a round of steroids to reduce the gut inflammation.

One night as we were lying in bed winding down to sleep, I heard him drop his magazine on the floor and start what I now know was agonal breathing. I called 911 and did my best with CPR, but his heart had stopped and in all likelihood he was dead before the paramedics arrived. He was 53 years old.

I found out from his death certificate that he had severe ischemic heart disease. It was undiagnosed because he hadn’t had regular medical care for years because of the vicious circle of unmedicated symptoms/inability to work/no insurance.

That’s my horror story. There’s also my 4+year quest to be diagnosed with MS, being told by multiple doctors that if I lost weight I wouldn’t be so fatigued I could barely move, or have vertigo, or fall down for no reason, or whatever symptom I had at the time. But hey, at least that story eventually ended with diagnosis and treatment… as long as I have my job and insurance, anyway.

I’m intersex and have both male and female anatomy. US healthcare “insurance” isn’t coded for people like me. It assumes a sex binary when the facts of reality show otherwise.

Back at my old job, I had full premium health insurance. However, they kept denying each and every claim, denying literally everything. They unofficially recognized my intersex condition and used it against me.

Whenever I filed a claim as female, they’d deny it and claim I was male and thus the claim was incorrectly filled out. When I filed as male, they’d pull the exact same stunt now claiming I’m female and thus the claim was incorrectly filled out. Whatever the claim, large or small, it was always the wrong sex on the paperwork.

It was a "heads I win, tails you lose" situation. I have a better job with the government and with a different insurance company, but they too are starting to pull the same stunt. I hate this country for allowing such corruption to thrive.

I used to live in China, where socialized medicine was in theory available for everyone, but in practice most everyone who had a decent job had private insurance from their employer not unlike in the US, which was my situation. It was…fine, but I was a healthy young adult and didn’t have much going on medically. I’ve heard some horror stories from others about the degree of care they received, and had one experience where my doctor simply attributed my migraines to my “unhealthy American lifestyle”, but I never had to worry about coverage.

When I moved back home to Massachusetts a few years later, I didn’t have a job lined up right away, but I did gain immediate coverage through MassHealth (the system the Affordable Care Act was based upon) and it was very cheap. I didn’t have to pay for coverage, but did have a couple copays here and there which weren’t anything crazy.

I started up one job, was laid off after just a couple months when the pandemic happened, and MassHealth was still there to give me some peace of mind. It’s not a perfect system, but it beats running the risk of suffering a health episode that leaves you financially destitute for years and years. I don’t know how well I would have managed elsewhere.

I eventually landed a more stable-long term career and get employer-provided insurance through Tufts. And it’s okay, but I recently had to fight a months-long prolonged battle to get a prior authorization approved for a med I had been taking for years that they just decided out of the blue I didn’t need to take anymore. And it took a lot of back and forth from my doctor to really stress that I needed to stay on this med before they eventually caved and gave me a 1-year approval, but now I’m worried I’ll have to go through this whole song and dance again when that time elapses in a few more months.

I think it’s just a bit ridiculous that the insurance company can simply decide they know my health situation better than myself or my doctor who I’ve been seeing for years now, and out of the blue make life-changing decisions without even having spoken to me or my doctor first.

My childhood friend needed an operation, her family made a commercial for the local TV station trying to raise the money, but she died before they could get enough.

I’ve got cluster headache. Only medication that had any noticeable effect was Prednisone. Not even that expensive of a drug, but more than I could afford out of pocket. Insurance wouldn’t cover it because they considered an oxygen mask to be a more appropriate treatment, even though I’d been using them for months with no improvement, and O2 only works for a small percent of people with cluster headache, anyway.

Couldn’t afford to get the meds. Not legally, at least. A coworker was taking Prednisone for a different condition, and managed to convince his doctor to double his dosage, and I paid him for the difference, until he stopped taking it altogether. Ended up having attacks again, and missed enough work because of them to get fired. Between the pain and losing my job, that was easily one of the lowest points in my life.

I wouldn’t wish our healthcare system on my worst enemies.

Canadian here. Had an accident and took a ten minute ambulance ride in Minnesota. $1400.

My spouse had their lung collapse. Insurance denied it because we didn’t get advance approval for their lung to collapse.

European visiting the US, so it’s going to be pretty mild.

This was early January, 2021, so I needed a negative covid test before I could start the one month of work I had planned (my reason for being there).

Me: “Noted. I see there’s a clinic across the street from my hotel, I can have it done tomorrow morning.”
Shoreside rep: "Sorry, can’t do that here. It has to be this specific clinic with which we have an agreement.
Me: “How about my travel insurance, won’t they cover it anywhere?”
Rep: “We don’t know that until billing, and then you’d have to expense the copay, which management doesn’t like”

That’s when I learned wtf “copay” is. I had loads to do the day after, but I spent most of the day in a car, back and forth, so that I could visit this one specific clinic for a test that took five minutes.

And if Houston city planners weren’t bribed by Big Concrete and Big Car Dealership, I’m sure the ride would have been significantly shorter as well. As a sidenote, I find it pervertedly fascinating that Houston is a city that somehow manages to be located surprisingly far from Houston itself.

Deny. Defend. Depose.

I’m rawdogging life with pretty bad ADHD, depression, anxiety and probably autism because I have always been poor lol

I could not walk for more than 5 minutes without excruciating pain. I finally asked to be taken to the hospital after a back spasm that had me bash my face after a fall.

Went to the hospital. Was diagnosed with “mild scoliosis” and “anxiety” and sent home with stronger than average Tylenol. Was bedridden for nearly 2 months. Lost my job. Got other appointments for GP. Looked and said I needed a specialist. I could not afford a specialist, as I was now out of money. They shrugged and wished me luck.

I was forced to stay like this for nearly 2 full years.

When I was on the verge of killing myself, someone offered to pay for a chiropractor. I didn’t care. I had nothing to lose.

Anyhow, long story short, guy found that my spine had been forcefully lodged into my pelvis and stuck there. Dude had me healed in week.

This is NOT an endorsement for chiropractors— this is a testament to the failure of the healthcare system. I could not see anyone, so my desperation led me there.

I still have back issues. But I can walk again and be touched without pain.

My wife has a rare disease. Requires expensive drugs monthly. We hit our max out of pocket early every year.

Bye money. forever. until I die.

Sometimes you don’t need anything crazy to describe how shitty our healthcare system is.