I have a confession to make: I’m not always an effective advocate for my own care. It’s probably helpful for me to put this into context. I have been working in and around healthcare organizations for more than 25 years. I’m a researcher by trade, and worked with institutions across the gamut of the healthcare industry: payers, pharma, hospitals, medical device manufacturers, clinics, pharmacies, even tech vendors. The focus of my work has always been stakeholder advocacy (as opposed to business advocacy). I’ve consulted and stood on numerous stages calling for a more human-centered health system, one that takes into account what people need to be healthy as individuals, both personally and professionally.

But again: I’m not always a very effective advocate for my own care.

Here’s why. The first two cats I adopted were semi-feral. One of them, Marcus, was food motivated and therefore bribable. But Sunapee was never going to let her guard down. To wrangle her for the vet I had to trick her and then catch her. And Sunapee wasn’t easily fooled. On one particular occasion, the wrangling resulted in a bitten finger. I held it in running water, made it bleed, applied disinfectant liberally, but by the end of the day, it was swollen, stiff, and painful. It wasn’t the first time I’d been bitten, so I knew I most likely needed antibiotics. This was after-hours, and before urgent care clinics were readily available, so I went to the ER.

After a brief wait, I saw a physician who looked at my finger, heard my story, and told me I needed an x-ray, just in case a piece of the cats’ tooth had broken off. Now, my vet examined my cat, including her teeth, within 15 minutes of the bite. I was 90% sure this was a run-of-the-mill bite and all I needed was antibiotics. I may even have said so. But that’s as far as my self-advocacy went.

For some reason I still can’t completely explain, I froze. I pictured a scenario in which this doctor who felt strongly that I should have an x-ray would get angry and refuse me antibiotics if I declined his preferred diagnostic pathway. My heart literally started racing. This doctor was not aggressive or forceful – if anything I’d describe him as tired, bordering on beleaguered. But I sat there in fear of his power to provide or withhold the antibiotics he had already acknowledged I needed.

I had the x-ray.

And then I held my breath (and my tongue) while the doctor used two different sterile kits to dig into the wound on my finger because he saw something on the x-ray. The x-ray reader was in the hallway, so I didn’t see it until the way out (when he was trying to convince me I should see a hand specialist as he hadn’t found anything despite the digging).

If he and I had looked at that x-ray together, I would have had a different experience. Because what he saw on the x-ray was a shadow on my distal phalange. And my cat bite was on my medial phalange.

I don’t think he did this on purpose. In recalling this story, I had to think hard to remember where the bite was – and the bite was a big deal for me, and only a minor incident in the life of an ER doc. I think it was an understandable lapse that occurred because the ER wasn’t set up for the doctor and the patient to even be in the same room with an x-ray viewer, much less to look at the image together. And in a busy ER, I think it’s probably easy to mix up the distal and medial phalange.

When I look back on this, I’m not frustrated with the doctor. I’m frustrated with myself. Because I know that systems are not (yet) designed to support shared decision making or to incorporate the full expertise of the patient and the clinical team.

And yet, I didn’t ask the questions that would have avoided time, cost, and pain. Something like: “My veterinarian examined my cat’s teeth and there was no evidence of a broken tooth. I would prefer not to have the x-ray because I think the likelihood of there being a tooth shard in the wound is low. What are my treatment options if I forego the x-ray? What are the risks if there is a shard and you don’t remove it today?”

I could have invited a more participatory conversation, and I didn’t. Why? Fear and a perceived power gradient. I was afraid I couldn’t get the care I needed when and where I needed it if I didn’t go along to get along. Odds are, I was wrong. But up to that point, most of my advocacy had been from a more adversarial and system stance – I was used to pushing against abstract systems of power, not looking them in the eye.

I’ve learned a lot since that experience. I’ve learned that knowledge can crumble in the face of emotion, so we need to help people identify sources of safety if we want them to advocate for themselves or others. I’ve learned that personal connections go a long way toward partnership (even in the ER), so it’s worth looking beyond the transaction and finding a human connection. And I’ve learned that system design can make or break participatory medicine, so we still have a lot of work to do together.

But let’s do it. We all deserve better care.

Liz Boehm is an Executive Strategist and board member of the Society for Participatory Medicine. You can find her on LinkedIn at https://www.linkedin.com/in/liz-boehm/