The Chronically Ill Patient’s Guide to Dealing with Insurance

So, I have a few chronic illnesses (fibromyalgia, migraines, carpal tunnel syndrome, chondromalacia patellae — the fancy term for shitty knees, and depression among others).

My parents handled doctors and insurance for me when I was a kid, but now I’m an adult, I’ve had to learn to do it myself.

Now, I’m not a professional. This is based on a decade or so of experience, plus two decades watching my parents and taking mental notes, but I have zip training as an insurance adjuster/biller, or anything like that, okay? I’m just trying to offer the tips I have in case they can help others.

  1. Take notes. Take ’em during the appointment, take ’em when you notice symptoms (bonus for writing them on a calendar or in a planner or something and taking that to your appointments!), take ’em when you file claims or call your insurance. Nobody’s memory is perfect, and you’ll sound way more confident (which is VITAL for handling insurance companies) if you have a shitton of documentation for everything from symptoms to when you actually mailed that claim form.
  2. Make a game of it. I pretend that my claim forms are a magical ritual I perform that causes money to appear in the mail. This helps me not get pissed the fuck off that I have to shell out nearly $1,000/month up front and then ask my insurance nicely to please pay me some of it back. Likewise, calling your insurance to dispute something can be a game — one where you get points for not shrieking at the person that this is the umpteenth time you’ve had to file this goddamn claim and if they’d just tell you what you need to know you could be done already just pay me wtfffffff!
    Also, taking the approach that you will doggedly keep trying until you win makes a difference. I had to fight my insurance over a set of claims for almost a year to get ’em to pay. But here’s the thing: some companies make it hard on you to get you to give up. Every claim they can get you to give up on is one they don’t have to pay. And you know they don’t want to pay, they have shareholders to keep happy and profit margins to make. But you are not some number on a spreadsheet, you are a person with health issues who needs your goddamn money! So keep trying. You can do it.
  3. Be nice to the people on the phone. If you’re calling your insurance, you’re probably doing so because of a problem, not to thank them for doing a great job, right? Right. But the person on the other end of that line didn’t do the thing that caused the problem (losing forms, misfiling claims, you name it, I’ve had to deal with it), and they might actually help you solve it! So. I always say a variant of “I know this isn’t your fault, I’m just so frustrated. Can you help me?” This helps get you on the same team, which is vital. I once had a gal tell me to fax her all the forms I was having trouble getting the company to accept, and said she’d sort them out, and she did. Ended that nearly year-long struggle to get the claims paid. Never would’ve happened if I’d been mean to her!
    Don’t get me wrong, I know how hard this can be, so cut yourself some slack if you sound cranky. Acknowledging to the person on the phone that you’re aware it’s not their fault at least once or twice will mitigate it, and actually make them more sympathetic to you.
  4. Make sure your doc puts all the necessary info on your invoice. What is necessary varies from company to company, but when I was with Cigna (who were really really picky), I used the following:
    • Doctor’s name
    • Doctor’s address
    • Doctor’s tax ID
    • At least one diagnosis code (ICD-9-CM is good)
    • At least one procedure code (CPT-4 is good)
  5. Be prepared to have to try a few times with the first round of claims. Of course, some insurance companies won’t accept whatever diagnosis code your doc has used. Here you’ll have to work with the doc, because the insurance company almost certainly won’t tell you what they will  accept. Sometimes doctors will know what codes particular companies will and won’t accept, so be sure to tell them what insurance carrier you’re with.
  6. If you have the option, go with a PPO. HMOs will make you jump through a jillion more hoops, and will really restrict what specialists you can see. I’ve gotten my PPO to cover acupuncture with zero hassle. PPOs also seem less likely to tell you your illness isn’t real, but that may just be my experience.
  7. Take care of yourself. Dealing with bureaucracy can be really stressful, I get it. I’m pretty good at it, at this point, but it used to freak me out. I’d set up rewards, take breaks, and do all kinds of things to help deal with the stress of having to call again to deal with something. Get your friends to cheer you on or help you practice, that kind of thing.
  8. Be grateful you have insurance. Lots of folks with chronic illness don’t, and the thought of being in that situation scares the crap out of me. Reminding myself that insurance is how I actually afford all the expensive shit it takes to keep me moderately healthy really helps me not hate them. Gratitude is healthy, and healthy is in short supply when you’ve got a chronic illness, nu?

So those are my tips. Do you have more, readers? I haven’t ever had to deal with an insurer refusing to deal with my various conditions, for example, so I don’t have any good advice around that (except maybe get your docs to rediagnose you? A different Dx code can make a big difference).

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4 Responses to The Chronically Ill Patient’s Guide to Dealing with Insurance

  1. Madelon Wise says:

    Yes, I do. Become well informed about your illnesses and be very assertive about getting the docs to listen to you. It took me a year to get the world-renowned sleep clinic in Madison to listen to me about having sleep apnea. They were so taken with my very spectacular case of restless legs that they chose to ignore the results that showed I have apnea as well. Persistence is very important.

    • Ealasaid says:

      Yeah, Doctors are a whole post in themselves (which is in the works!). That said: persistence is vital when dealing with insurance companies, so I still agree with you.

      That’s absurd about the sleep clinic people! WTF! And go you for making them listen.

  2. Casey says:

    These are great tips. I especially agree with #8 because for 18 months post-stroke I had NO insurance. That’s 18 months of ER trips, MRIs, CTs, specialists all scratching their heads, and me unable to even process what was going on around me. Now, when people complain about Medicare, I tell them my story and the tally of those months. Medicare has saved my ass more than once. Oh – one more – with the Really Big bills, most hospitals are willing to take monthly payments if you call and ask. You just have to apply the same strategy as you outlined for dealing with the insurance folks.
    -case

  3. Alex Summers says:

    Second the value of a different Dx code. I once had a diagnosis that was (incorrectly) coded as psych (not covered), which I got changed to medical (covered). The English “translations” of the two codes sounded almost identical to my non-expert ear, but to the insurance company it was the difference between night and day.