The Three Ring Circus of American Healthcare

You could describe my experience with healthcare in America as a three ring circus. Within these rings are the ringmaster (the insurance company), my husband’s employer, and me, performing my act of jumping through hoops in an attempt to please the first two and keep the spotlight on myself.

I have multiple medical conditions, type 1 diabetes being one of them. I require insulin to stay alive and the assistance of technology to keep me safe because I often cannot feel low blood sugars. You would think that because access is literally life or death for me, there would be no issue getting what I need, but you would be wrong. Right now I am privileged even to be in the circus tent, but my act is exhausting.

I must always pay attention to the other rings, as the ringmaster and the employer can change what they want from me at any moment. It does not matter if I have done everything they have directed me to do, I cannot get comfortable or turn my back. If I lose focus I could miss the new hoops they have thrown at me. Missing one (prior authorizations, referrals, networks, formulary changes, quantity limits, refill requirements, medication tiers, appeals, billing errors, deductibles, coinsurance, visit limits, per-year restrictions) could mean delays in care or, worse, not getting what I need at all, and my act will completely fall apart. I cannot stop jumping, I cannot miss a hoop.

Often my audience has never had to deal with chronic health issues and has no idea how much goes into keeping my act going. They see only me, the performer who “does not look sick,” who rarely lets anyone have a behind-the-scenes glimpse of the exhaustion, the struggle, and the fear that at any moment it can all be taken away. Those who have created this circus are only interested in the ticket sales. They do not like to pay out.

I am reaching the end of my act, the spotlight is dimming. My husband’s job is ending. He is old enough for Medicare, I am not. I will not be able to work full time and was planning to get an ACA plan, but I do not know if that tent will even be standing anymore, and if I will be let in. Can I afford the price of a ticket?

Health care used to mean safety. Now it is a source of fear, not just for me but for so many. Those of us who need it have either become pawns in a political game or been dismissed outright because our need somehow makes us unworthy. I am so grateful for those who want to build a bigger tent instead of turning people away, but that too requires so much effort. I am tired, I am human, I don’t want to perform anymore. I just want to put down the hoops, step out of the circus, and live.

—Lisa

Have thoughts? Submit a letter to the editor.