What Do You Do When The Systems Fail You?

Although I’ve lived with a chronic illness, and a medically abandoned one at that, for two decades now, I read something on Twitter the other day that’s stuck with me. The gist of the post was that for those of us with chronic illness (and I’d argue neurodivergence as well), we’re a group of people who have to wonder not just if we’re sick enough to go to the doctor, but once we’re there if we’ll be believed.

Think about this for a moment, especially if you don’t have a chronic illness and/or don’t usually think about whether physicians believe your lived experience. You’re experiencing pain, severe pain. Maybe it’s a migraine, maybe it’s GI pain and cramping, maybe if you’re someone with a uterus it’s very heavy periods and cramping that leaves you bedridden for a few days each month, perhaps has long as a week–EACH AND EVERY MONTH. These are all things people live with and they’re all things doctors dismiss.

When doctors dismiss your lived experience, they fail you. The medical system as a whole fails you. And what do you do if you’re part of a marginalized population (keeping in mind that BIPOC individuals face far more of this than white people do), and the system fails you?

Look, if there’s anything the pandemic has taught me, it’s that doctors love to go on Twitter and proclaim how good and wonderful they are, while completely and totally ignoring the systemic failures of their colleagues. And to be honest, if you’re in a profession where there are systemic failures, and you’re not thinking about how to make the system better for EVERYONE, not just your patients with access to care, then you’re part of the problem. We can believe this to be true just as much as we can believe patients when they talk about their lived experience.

So let’s ask the question again, if you’re a patient and the medical system has failed you, whether that’s the first time or to the point where you won’t even go to the ER in the event of a supposed heart attack because you know you won’t be believed (and yes, these patients exist and no, it’s not their fault)., what do you do?

It’s the question that’s at the heart of Chicken Yogi. Those of us who need to “free range” our way to wellness because the systems simply don’t work for us. We may turn to alternative therapies, or group source through social media communities what worked for other people. We may suffer in silence, or mostly in silence, and a great many of us will do things, like work full time or keep going far beyond the point when most people would have quit.

Frankly, it’s a conversation I’d love to have with other people who also have been failed by the medical system. I interface with it when I have to, for example to get my anti-anxiety meds filled so I can continue to work until I’m fully self-employed, but otherwise, I look for other ways to try and resolve situations. It’s how I stumbled across yoga and meditation many years ago, and now my meds give me enough space to recognize a panic attack, I can then use the skills I have to help brings things back into balance.

I network. I listen. And I’m always willing to learn. I am a student not just of my own body, spirit, and mine, but of the universe and the world. When the systems fail us, we need to build new ones.