21 Spoonie 'Hacks' for Dealing With Health Insurance Companies


There is one challenge that unites so many spoonies (particularly in the U.S.), no matter what diagnosis they’re dealing with: the challenge of dealing with insurance companies. Getting your insurance company to approve your treatment can mean daily phone calls, endless paperwork and constant stress from the uncertainty of what it will decide to cover (not to mention the devastation of learning a treatment won’t be covered).

Working with insurance companies requires patience and a strategy. It helps to know how to maneuver within the complicated bureaucratic system that sometimes seems determined not to give you the coverage you need. So we asked our Mighty chronic illness community to share their advice for dealing with insurance companies. The next time you need to make that phone call, perhaps these tips will help the process go smoother.

Here’s what our community shared with us:

1. “Write down everything. When you call them, write down the date, time, who you talked to and everything they said. Also be as patient as possible because it’s unfortunately going to take a lot of phone calls to eventually make progress.” — Kayla S.

2. “Always get the name of the customer service rep you spoke to as well as a call reference number when possible. The majority of insurance companies use call reference numbers to document your call or record it for quality assurance. This can help a lot when appealing to the insurance company. Especially if you are told a product/procedure is covered by your policy or that a medical claim is being reprocessed for payment.” — Kelsey F.

3. “Be a squeaky wheel! Like, the squeakiest wheel the world has ever heard! I had to deal with out of network coverage with my insurance and it took three months and I ended up having to reschedule the surgery I was trying to get covered. I didn’t get anywhere with them until I called them every day! Don’t give up, keep squeaking!” — Tyffanie E.

4. “Keep a copy of every form, statement, medical record and anything else you may have. Put it in a tabbed binder so everything is easy to find.” — Kathryne Z.

5. “Save any yelling or threatening for the person highest up. A basic level customer service rep does not have authority to override anything. Don’t take your anger out on the wrong person!” — Cathy M.

6. “One thing that has been really helpful has been my therapist — as a medical provider, she’s really familiar with how to deal with insurance companies, how they work, how to get through to them, what kind of language to use, who to ask to speak to, etc. A lot of our sessions lately have been strategizing on how to deal with my very difficult insurance and her expertise has made a huge difference!” — Alanna B.

7. “Know what your policy states before calling. Always be firm with them on why you’re calling, what you expect and thoroughly explain your reasons. If you need to write it all down beforehand do it and keep a pen and paper handy so you can write down anything they tell you. In some states it’s permissible to record the conversation as long as one party knows it’s being recorded (at least it is in Kentucky). Check your state/country’s laws. Recording the conversation can help you when you can’t remember parts of the conversation.” — Sherrie P.

8. “There are several advocate services… make use of them! Saves you time and stress, and can often succeed where you have failed.” — Cathy M.

9. “Don’t be afraid to ask to speak to a supervisor. Customer service reps don’t always have access to more detailed information, but won’t offer to get a supervisor. You’ll have to ask.” — Tracy S.

10. “If you have to call them to get approval always get it in writing! A verbal approval from anyone at your insurance company is worth nothing if they go back on their word.” — Sarah L.

11. “Call as early in the day as possible, and *try* to request the same person each time. Name drop if you can’t reach your person working on your issue. Call as early in the day as possible, because I guarantee you’ll have to make a bunch of phone calls. Our insurance company for my kids always blames the NYS Health Exchange, who in turn says to call local Medicaid offices who tell us the problem lies with the original insurance company. We got stuck on a Friday trying to get medication for our son when we were told his insurance wasn’t active. Three hours later after talking to multiple places, we called the local office and they were closing for the day. We got lucky and a supervisor called back after hours, but still had to wait the weekend for the glitch to be fixed. Patience.” — Tracy S.

12. “Insurance companies don’t want to pay for anything they don’t have to. They try to make it hard and create hurdles in hopes you’ll give up. When you are persistent and make things difficult for them, they’re more likely to give in.” — Amber F.

13. “Explain the issue. Even though they work for an insurance company it doesn’t mean they have a medical degree. I had to explain that my ‘high’ dose of [my medication] was not for depression but neuropathy. Once they understood that they were much quicker to help me find a solution.” — Lizz R.

14. “Make sure you don’t hold back on telling: How sick you are/how bad you need the treatment/medicine. Even if you find it difficult to admit how much you are struggling, it’s important. If you’re too ‘brave’ they will think you don’t need it. Unfortunately it’s a thin line between telling how you really feel and people thinking you’re exaggerating and thinking it’s all in your head…” — Lenthe S.

15. “Before you file any appeals (if you get to that point) if they deny coverage, you may have the option to have your doctor call to speak directly with doctors at the insurance agency to make a plea for you. This is a step that they don’t make well-known/they claim that the doctor should know about and if you file an appeal, they’ll say it’s too late for that step to be done.” — Beth P.

16. “As frustrating as it is at times, I try to be as polite and kind as possible at all times while dealing with my insurance company (especially on the phone). I seem to have people who are more willing to answer my questions and work with me rather than when I am frustrated and showing it in my voice.” — Ashley P.

17. “Patience. Most of the time it’s not the person you are talking to’s fault that the insurance company has ridiculous policies. They are overworked, too.” — Alison H.

18.Get everything on paper! If someone tells you something over the phone, you request that information be mailed or emailed to you. Keep records, don’t let them change the story.” — Ansel T.

19. “[Some] doctors have a ‘pay out of pocket’ price for some procedures at severely discounted prices because the time and effort of having billing, nurses, medical technicians and doctors to sort through it costs more in man hours than a short cut out of pocket. I’ve had a $1050 in office thing bartered to $150 because I’m a regular patient and the doctors know how much it helps.” — Katrina O.

20. “Ask for help from social workers at your doctor’s office. They have tricks up their sleeve and can pull a lot of strings to get things done through your insurance or if insurance still refuses they have connections with outside resources to help get you what you need. Wish I would have known these people existed sooner!” — Barbie V.

21. “Send important papers certified with a receipt if at all possible. That way when they claim they never got them (looking at you, Prudential) you have proof they were received and the rep or caseworker will have to go look for them.” — Bethany M.


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