Some thoughts I’d add to the linked post: “Paying for Crohn’s disease treatment in America is more stressful than my symptoms”

First, pain and fear are powerful motivators. Once you’ve had a really painful or frightening experience with your health, you’ll do almost anything you can to avoid it happening again.

Example? I struggled with some excessively large kidney stones when I was 27 and have kind of lived in fear ever since; I don’t want to ever encounter that sort of pain again. Since then I’ve been fanatical about drinking plenty of water to stave off forming sedimentary rocks inside my body. 10 glasses of water a day, no matter what. More if I’ve been sweating or sick.

I subsequently learned that it’s a problem with the way my kidneys function and it doesn’t really matter how much water I drink, but I still drink a ton of water. The terrifying trip to the emergency room and two subsequent surgeries left a lasting impression.

More to the point, for the last 12 years of my life, I’ve been focused on avoiding ulcerative colitis flares and the accompanying pain, nausea, and 20-times-per-day trips to the toilet. There is something viscerally horrifying about seeing your life literally bleed away out your ass.

I learned to skip eating so I could drive to work and get through the day without having to sprint to the public restroom. I swallowed almost 20 pills a day and suffered the indignity of nightly 5-ASA enemas. I learned what “roid rage” really was. I stopped dining out and refused to travel for the fear of not being able to find a toilet if I needed it.

It took me almost a decade of working through one treatment after another – and a bankruptcy from the costs of copayments for medical treatment and lost wages from missed work – to realize that the safe, easy and convenient drugs weren’t working for me.

I was thrilled when I learned a combination of Remicade (a biologic drug) and 6-MP (a chemotherapy drug) did work for me.

Remission is great, but it’s not cheap or convenient or easy or even particularly safe. I wholly appreciate having benefits that cover the 45 tablets of 6-MP, four vials of Remicade, saline, IV pump, tubing, pre-meds and 4 hours of a home nurse that I go through every six weeks. It’s well worth the $800/month that I pay in premiums every month

I wouldn’t be able to afford it without health insurance.

I don’t think the stress of worrying how I’m going to pay for treatment is worse than the disease itself. But it is absolutely wretched being tied to a dead-end job in an unsafe location because you need health insurance to pay for treatment to keep you alive.

It is wonderful having a job with health insurance, but I wish I had the freedom to change jobs. I wish health care was considered a human right in this country.