The Courage to Question Your Doctor

(when they're questioning your sanity)

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When I was first diagnosed with schizoaffective disorder in 2014, I didn't have the language or the knowledge to advocate for myself. I couldn't properly articulate to doctors what I was experiencing, explain to loved ones the more complex things that I needed, or navigate a broken medical system that often treats those with psychotic disorders as problems to be solved, rather than people to be heard.

But here's what I've learned: our voices matter. Even—perhaps especially—when those voices are dismissed as symptoms, rather than expressions of our humanity.

The Challenge of Self-Advocacy When You're Questioning Reality

Let's start with what makes self-advocacy so very challenging when you're experiencing psychosis.

First, there's the nature of psychosis itself. When your perception of reality differs from those around you, how do you trust yourself enough to advocate for your needs? If you're hearing voices that others don't hear or seeing things others don't see, how do you distinguish between what's helpful to communicate and what might be dismissed as symptomatic or unimportant to deal with, “since it’s all in your head.” (Cue one of my favorite Fiona Apple songs; real ones know).

It's like trying to convince someone there's an elephant in the room when they can't see it, and even though you're very appalled by the elephant, you're somehow the only one who finds the elephant concerning.

Learning Self-Advocacy: Small Steps Toward Reclaiming Your Voice

My own journey toward self-advocacy began with small steps. The first time I told a psychiatrist that no, I wouldn't take a medication that had previously caused me awful side effects, I was scared. I expected anger, dismissal, or worse—being labeled as "difficult" or "non-compliant" in my chart, the latter term being one that indicates that you’re a Bad Patient, even if you’re simply sharing your truth and trying to find a way to be alive that works for you.

Instead, something surprising happened. The psychiatrist paused, nodded, and said, "Okay. Let's try a different antipsychotic." That moment was transformative. It showed me that I could have a voice in my treatment without being deemed uncooperative.

From there, I began to experiment with other forms of self-advocacy:

I started keeping detailed journals of my symptoms, medication effects, and daily functioning. This gave me concrete information to share with providers, rather than relying solely on my memory—which, let's face it, isn't always reliable when you're dealing with cognitive symptoms or medication side effects. The conversations became more like me saying, "No, doctor, I'm not just saying the hallucinations are worse—here's my log showing they've increased from twice a week to daily since we went up to 40 milligrams."

Sometimes I brought a trusted friend or family member to appointments. Not to speak for me, necessarily, but to help me remember what was discussed and to serve as a witness to how I was treated. There's something powerful about not being alone in these spaces where vulnerability is inevitable. And sometimes health professionals take me more seriously if I have a certified non-crazy person in the room with me, or ideally, as I jokingly-but-not-really-jokingly say, a white cis man. I hate that this is true, but I've found that it is, in fact, usually true.

Gradually, I started to view my relationship with healthcare providers as a collaboration rather than a hierarchy. Yes, they have the medical expertise I lack. But I have expertise in living in this particular body and mind that they can never have, and while I don’t have a certificate to hang on my wall to prove it, I do think that it’s a badge of honor to survive something extremely difficult.

When Caring for Someone Else Teaches You About Yourself

Self-advocacy is challenging enough, but learning to advocate for someone else presents its own unique difficulties. This became truly clear to me when my partner C was diagnosed with cancer.

Suddenly, I found myself navigating a different kind of healthcare system, but one with similarly complex power dynamics. Lo and behold: I discovered that many of the skills I'd developed advocating for my own mental health care were transferable to this new context. Though I never expected my crash course in "How to Convince Psychiatrists You're Not Making Things Up" would prepare me for "Advanced Studies in Making Oncologists Pay Attention," but here we were.

It started when C had been feeling unwell for weeks—persistent nausea and inability to keep food down. His doctor had prescribed antacids and suggested it might be stress-related, which almost made me laugh. Stress-related? I wanted to say, "Yes, doctor, he's stressed because he can’t walk into the kitchen without barfing." But I held my tongue. My years of psychiatric appointments had taught me that sarcasm, however justified, rarely advances your cause. (This is maybe one of the hottest tips that I can share with you, dear reader.)

But I watched as C grew weakee. The vomiting continued despite the medication, and I was more worried than I'd ever been before.

I was in a Zoom couples therapy session with Chris when something in me snapped. We were discussing Chris's frustrating medical situation, and I found myself saying, "I can't be here right now. Chris needs help, and no one is listening." So I left the session, went to my office, and wrote a detailed letter to his doctor. I documented every symptom, every failed treatment attempt, and every concerning change I'd observed. I used the same methodical approach I'd developed for tracking my own symptoms. And I concluded with words that felt both terrifying and necessary to write: "I believe something serious is being missed, and I am requesting immediate further investigation." When I was finished, I texted the content of my email to C, and told him to send it to his doctor.