The Cost of Being Believed

The Cost of Being Believed: Self-Advocacy, Autism, and the Hidden Privilege in Healthcare

I want to tell you about the last six months. Not because it's unusual (I suspect it isn't, and that's exactly the problem) but because I think the ordinariness of it is the story.

It started with a gynaecology appointment. I won't go into every detail, but I'll say this: it was the kind of appointment that quietly took something from me. My agency. My sense that I was allowed to ask questions about procedures being done to my own body. The consultation itself, plus three separate procedures, including the time it took to change, lasted twelve minutes. Twelve. I left not quite able to name what had happened, only that I felt smaller than when I walked in.

As an Autistic person, I process things differently. I need time, clarity, predictability, a chance to ask ‘why’ without being read as difficult. None of that was offered. The appointment moved at a pace and in a language that wasn't built for how I think, and I didn't have the capacity in the moment to slow it down. That's the first incident. It's also the hardest to point to on paper, because nothing ‘went wrong’ in a way anyone would write up. It just happened to me, rather than with me.

The second incident: I was told I'd receive my results within 6 to 12 weeks. Three months after the max length of time, still nothing. No letter. No call. No indication anyone was thinking about me at all. I had to be the one to chase it: to phone (three times), explain who I was and explain why I was calling, and ask a stranger to go and check because the system hadn't thought to tell me itself.

The third: a pharmacist rang to tell me a prescription was ready to collect. I hadn't been told I needed medication. I hadn't been told why. So I had to advocate, again, on the phone, to a pharmacist who hadn't expected to be the one explaining my own diagnosis to me. Eventually, they read out my notes. That's how I found out I have a chronic condition that has, it turns out, been affecting my health for years. Not from a doctor. Not from a letter. From a pharmacist, reading a screen, because I pushed.

A question for you, while you're reading this

I'm curious what you'd have done in any of these three moments.

Would you have chased the results at week 13, or would you have assumed no news was fine and waited it out? Would you have asked the pharmacist “why,“ out loud, on the phone, to someone who wasn't expecting to be asked? Would you have gone back to that first gynae appointment and said, "wait, can you explain that again, I need a minute?”

I think the honest answer, for a lot of people, is I don't know, or even probably not. That's worth sitting with, because the ability to chase, to question, to demand an explanation from a system that has all the power and none of the urgency, isn't a universal skill. It's a resource. It draws on confidence, on not having been taught (explicitly or through years of being dismissed) that questioning a doctor is overstepping, on having the executive function and the spare emotional capacity on that particular day, on not being too exhausted by the condition itself to fight for information about it.

People assume this kind of self-advocacy is just ‘common sense’. It isn't. It's a privilege that sits on top of class, education, language, disability, race, gender, and plain luck in how you were raised to relate to authority. The system doesn't fail evenly. It fails hardest onto the people least resourced to notice it's failing them.

This isn't just my story, it's my daughter's too

My daughter has been through a version of this too, with her own GP. Before her last appointment, she had to go and find out about something called Jess's Rule, just in case she needed to invoke it to be taken seriously.

For anyone who hasn't come across it: Jess's Rule is a patient safety initiative named after Jessica Brady, a 27 year old who died of cancer in December 2020, three weeks after finally being diagnosed, despite having contacted her GP more than twenty times over the preceding five months. Her parents, Andrea and Simon Brady, campaigned for change, and the rule that now carries her name asks GP teams to ‘reflect, review and rethink’ if a patient presents three times with the same or worsening symptoms without a working diagnosis or treatment plan. It's sometimes summarised as ‘three strikes and we rethink’. It launched in NHS England in September 2025, with posters going up in consultation rooms.

Worth being clear here, since I'm in Scotland: health is devolved, and Jess's Rule as a formal NHS England policy hasn't been adopted north of the border. That doesn't mean it's useless to know. It still describes a standard of good practice that any GP, anywhere, could be asked to live up to.

It's a good thing that it exists. I mean that sincerely. Jessica Brady should still be alive, and if a poster on a wall means even one GP pauses and looks again, that matters.

But notice what it actually asks of patients: it doesn't create a system that automatically rethinks. It creates a rule that exists for us to invoke, that a young woman has to go and research, memorise, and be ready to cite to a doctor, just in case she isn't believed on her own word. My daughter shouldn't need a named policy in her back pocket to be taken seriously about her own body. The fact that she does, and that she knew to prepare it, tells you something about what she's already learned about how she's likely to be heard.

What this is actually about

I don't think any single person in this story was malicious. I think a receptionist forgot to send a letter. I think a clinician was overbooked. I think a system optimised for data quietly deprioritised a patient who wasn't loud about it, until she was.

But I don't think that makes it not about power. Medicine, historically and structurally, is not neutral. It was built by and largely for a default patient who is not disabled, not neurodivergent, and (especially in gynaecological and reproductive care) not a woman being listened to about her own pain. The dismissal of women's symptoms, the assumption that a patient describing pain is exaggerating rather than accurate, isn't incidental to how gynaecology developed. It's baked into it. Layer Autism on top, where communication norms, processing speed, and sensory experience already fall outside what a rushed ten minute appointment (or a twelve minute one, procedures included) is designed to accommodate, and the gap between the care that was offered and the care that was needed gets wider still.

That gap is where patriarchy and ableism actually live in a system like this. Not usually in one dramatic, nameable act, but in the accumulation of small defaults: whose time is assumed to be worth protecting, whose questions are treated as reasonable, who gets a letter without having to ask, whose ‘difficult’ behaviour is read as self-advocacy versus who gets flagged as a problem for the exact same behaviour.

So, what would you do?

I keep coming back to this. If you'd been sent home with ‘6 to 12 weeks’ and heard nothing by week 13, would you have called? If a pharmacist rang about medication you didn't know you needed, would you have asked why, or just gone and collected it? If an appointment left you feeling smaller and less able to speak up, would you have gone back and said something, or would you, like most of us most of the time, have just carried it?

There's no wrong answer. But it's worth asking yourself honestly, because the answer tells you something about the resources you're carrying that not everyone has. And if the honest answer is ‘I'd probably have chased it, I'd probably have asked’, it might be worth thinking about who, in your life, wouldn't have. And whether you'd be willing to make some noise on their behalf too.

If you're in Scotland and navigating something similar, chronic illness, a late diagnosis, or a health system that isn't communicating with you, the Patient Advice and Support Service (PASS) is worth knowing about, and NHS inform Scotland (nhsinform.scot) has information on raising concerns and complaints. You're not imagining the friction, and you're not the problem