I had an eye appointment recently. There are only a few kinds of doctor’s appointments that just inherently stress me out: eye stuff and foot stuff. So I was already on edge on the drive over, navigating heavy traffic because of a highway shutdown and a weird, winding route I wasn’t familiar with. By the time I parked in the garage, I was near panic about the idea of having to drive back through all that with my eyes dilated. I’ve always been told it’s safe to drive with the little plastic sunglasses they give you afterward, but that doesn’t make it less daunting to have one of my more important senses (for driving, at least) altered significantly. I sat in my car wondering if I should skip the appointment and risk a no-show fee, or go in, because I was already there.
I felt genuinely nauseous with anxiety. I hoped that maybe I wouldn’t need my eyes dilated this time. No such luck.
I felt pulled between two responses: the “easy” route of surrendering to the doctor’s pre-assigned plan for me and deal with the consequences later, or pushing back, asking to do an exam without the dilation.
This was a critical moment for me. I think for a lot of people who have experienced harm in medical settings, and harm in general where our choice is taken away, “going along” sometimes feels like the safest option. I recognize this as a survival strategy I use to keep myself safe—even if an eye exam isn’t life or death, even if I have more options than I perceive in the moment.
This time, I chose to push back. I asked if the dilation was really necessary for the exam. The nurse told me it was strongly recommended, and they couldn’t get as much information from a scan, which was the alternative. When I expressed my worries about driving home, she offered a third option that I hadn’t known about: using half the regular dose of the eye drops so that the dilation would wear off faster. She couldn’t promise I’d be back to normal for my drive home, but that at least I wouldn’t experience after-effects for quite as long.
I liked that option. It wasn’t perfect, but it met my needs. The doctor was able to do the exam with only half the dose, and I was seeing better less than an hour later. I felt relief that I’d be able to see more easily, and that I had asked in the first place. Knowing that it was my choice removed a lot of the stress I’d been feeling.
I’ve worked with a lot of different providers across my lifetime, from the doctors who prescribed me hormones as a teenager, to the ER docs I saw when I had scary migraine symptoms at seventeen, and the many specialists I interacted with in college while trying to manage my emerging, confusing, often overwhelming chronic health symptoms (all while balancing a full course load and taking the bus to every appointment). There were many, many times that I “went along” with something that didn’t feel right or caused me even more distress. I would justify these times by telling myself that the doctor knows better than I do, even if they haven’t fully explained their reasoning; that they wouldn’t take me seriously if I questioned their authority; that I just wanted to get this over with.
Often, I believed that providers were not willing or able to fully meet my needs–particularly as a trans person with complicated health issues. I believed this based on past experiences. I believed it because I was afraid of being dismissed, because people with anxiety and OCD are often treated as crazy, and especially because people who continue to take COVID-19 precautions six years into the pandemic are also often treated as crazy.
As a result of not asking for what I needed, I wasn’t getting my needs met. I wasn’t quite ready to take the risk of asking. And while many providers are not willing or able to meet my needs, many are.
In recent years, I’ve gotten better about this: calling ahead to request the dentist wears an N95 when they’re sticking things into my open mouth, and going to a different location when they refuse to accommodate me. Challenging my provider when she dismisses my symptoms and describing how they impact my daily life. Choosing to find a new PCP when I get tired of chasing down disorganized MyChart replies to time-sensitive questions.
I’m not sure I was in a position to advocate for myself in this way when I first started seeking care for chronic health issues. Part of this came from lack of experience with healthcare systems, and partly because we receive the message that patients are deserving of less autonomy or power once we step into the office. I can understand why so many people continue to “go along” with things that don’t feel right, and why I still do sometimes. This is why I’ve wanted to think through what happens internally that might have allowed me (and might allow others) to overcome those feelings of shutdown.
What helps us move from shutdown to empowered self-advocacy?
1. Believing that I deserve to be treated with dignity and care. I would want someone I love to receive high– quality care. I would want someone I love to be treated with dignity and respect. Why is it easier to accept this lack of care for myself? To believe I deserve better means doing the difficult task of accepting that providers have caused me harm and did not always treat me with dignity and care, and that (like any other person), I deserve better in the future.
2. Believing that there are providers out there who want to support me. We all come in with past experiences in healthcare, both positive and negative. I am slowly replacing negative stories with the positive ones that I can remind myself of:
- The massage therapist who was a trans man and made me feel completely at ease
- The dental hygienist who was more than happy to wear an N95 to make me feel safe
- The gynecologist who made me feel totally un-embarrassed asking questions I felt shame around
- The (sadly now-retired) PCP who was confident and steady when handling multiple chronic health issues
- The GI doc I wished could’ve been my PCP
- The physical therapist who reminded me of how to move slowly
- The ENT who was empathetic about my anxiety over a new test, and explained all the steps to me slowly
- The doctor who asks “what’s next?” while I go through my long list of concerns
I’m reminding myself that there are really thoughtful, skilled, and knowledgeable healthcare providers out there, and that every trans person/survivor/human being deserves to be fully seen and cared for.
3. Believing myself about my symptoms and experience of my body. This is a difficult one for me. As someone with a lot of anxiety that manifests physically, I’ve been to the ER thinking I was having a heart attack. I also know that whether the symptoms come from anxiety or an identifiable physical source, the experience inside my body is real. These days, I try to track symptoms that are impacting my functioning for multiple days. I document in ways that I can share with my provider. Just because there is not an immediate test that explains my pain, it does not make it less real or worthy of care.
4. Knowing that I have a choice about what to do when something goes wrong. I don’t have to come back to the same provider that made an inappropriate comment to me. I can even offer feedback and make a report about it. When I have a more established relationship with a provider, I might share directly that something upset me and ask for a different approach.
5. Asking for clarification when I don’t understand. If I hadn’t asked about alternatives to eye dilation, I wouldn’t have been offered the half-dose option. Sometimes it takes asking why things are “always done this way” to understand why it’s necessary for me, or why it might not be. All of us deserve to understand the why behind the ways that our bodies are treated and cared for.
I know that my experiences with healthcare are shaped by many things. By being trans and chronically ill, but also by being white, masculine, well-insured, and with the ability to manage most of my healthcare myself. I speak English and live in an urban area with “easy” access to multiple providers. I know that providers’ perceptions of our gender, race, citizenship, socioeconomic resources, and more often have a profound impact on the care that we receive, and that the strategies that have allowed me to feel more in control of my own healthcare may not be strategies that feel accessible or safe for every person. I want to live in a world where every person has access to high-quality care, and I grieve that we do not.
My own process with self-advocacy in healthcare is imperfect and still changing. I think I will probably always feel tension between the pressure to be the easy, acquiescing patient who receives the bare minimum, and the difficult patient who asks for more. I hope that it keeps getting easier to ask for what I need, even when my needs aren’t always met. Often, it’s knowing I have the power to ask in the first place that makes all the difference.