Don't take off your shoes

Chronic Health, Neurodivergence & Learning to Advocate in Hospitals

I never really identified as someone with chronic health issues. Even saying that now feels strange, because objectively, I’ve lived a very medical life. I’ve had more than 50 surgeries (I stopped counting at 50, so the real number is higher). I use medical equipment every day. I live with pain every day. My body is different. My life has always included hospitals, procedures, and the kind of medical unpredictability most people only experience during a crisis.

And yet, I didn’t see myself as “chronically ill.”

Only recently did it dawn on me that this is, in fact, a huge part of my life. Not the whole story — not even the headline — but a significant thread woven through everything.

Finding language for my body

Part of this shift came when I realised that my strange, mismatched collection of medical issues actually fits the criteria for Ehlers–Danlos Syndrome. I’m not looking for that diagnosis. I’m not chasing labels. But the realisation gave me something I didn’t expect: solace.A sense of, “Oh. There’s a pattern here. My body makes sense.”

Sometimes naming something isn’t about identity. It’s about relief.

The way I was raised shaped everything

My mum raised me to believe that nothing about my physical health would stop me from doing anything. She didn’t just say it — she lived it. And I believed her. I still do, in many ways.

There were plenty of things I couldn’t do, and still can’t. But I never framed it that way. Instead, I made it my mission to prove the doctors wrong. And often, I did. Other times, they were right. But the point is: I never saw myself as “sick.” I saw myself as someone who kept going.

Even as a child, I found ways to make the medical world feel less frightening. When I had feeding tubes, I’d pretend the supplement going through the tube was pizza or burgers. My mum decorated my hospital bed. I had an ALF poster above me. Hospital school was a bright spot — and honestly, it’s probably one of the reasons I ended up in the field I’m in now.

There were terrifying moments too. I nearly died from MRSA as a child. As a young child, I had painful procedures without sedation because that simply wasn’t offered then. I remember telling a doctor, “Don’t do anything without telling me.” She didn’t listen. I kicked her in the face — not out of aggression, but out of shock and betrayal. I had advocated for myself and wasn’t heard.

To be clear – no one deserves to be hurt in their workplace.  And I feel bad about this.  But I was in survival mode, feeling very overwhelmed and the place I trusted in that doctor had been betrayed.  I didn’t intent to hurt her, it was a physical response to a very stressful situation.

Advocacy became survival

Even now, I ask medical professionals to tell me what they’re going to do before they do it. And still, some try to trick me. It makes me furious — because when you’re in a hospital, you lose so much dignity, autonomy, and control. Asking for predictability is not asking for much.

Since my autism and ADHD diagnosis, I’ve advocated even more clearly. Not because I suddenly learned advocacy — I’ve been doing it my whole life — but because I finally understood why it mattered so much.

The Unicorn Specialist

I’ve had the same specialist for over 20 years. He is what I call a unicorn — and I’m sad that he’s a unicorn, because it shouldn’t be rare to have a doctor who listens. I mean truly listens.

He trusts me. He knows that I know my body better than anyone else. If I say something is wrong, he takes it seriously. Not because I’m dramatic or anxious or “too in tune” with my body — but because he respects that lived experience matters.

There was one moment, about 13 years ago, that captures exactly why he’s a unicorn. I remember the timing because I was pregnant with my second child — which, by the way, is another example of proving doctors wrong. I was told I couldn’t have children. I have three. None of those pregnancies were easy, but I’m incredibly lucky.

I was about 20 weeks pregnant when I had excruciating abdominal pain. My husband convinced me to go to emergency. This was immediately after eating one of the most delicious burgers of my life, which soon made a very dramatic exit from my body. I was devastated.

When I arrived, the first thing I said was, “I’m not taking off my shoes. I’m not staying.”Because here’s one of my hospital rules: don’t take off your shoes. If you take off your shoes, you’ll have to stay.It sounds ridiculous, but these tiny rituals are what give me a sense of control in a place where control disappears fast.

The emergency doctor nodded politely, looked at my husband, and my husband basically said, “It’s her choice. I have no control over her.” True.

I asked for pain medication and said I’d be on my way. He advised me to stay. I didn’t. As I left, he said, “I’ll see you in about six hours when that pain medication wears off.”I laughed. “No you won’t.”

Of course, six hours later, there I was, crawling back in.He smiled and said, “Nice to see you. Are you willing to stay this time?”I grudgingly agreed.

Fast forward 12–18 hours and things had escalated. I don’t remember everything, but at one point there were about ten staff in my room — doctors, nurses, people talking loudly over each other. It was overwhelming, chaotic, and I felt completely lost in the noise.

And then my unicorn specialist walked in.

He told everyone to be quiet.He turned off the lights.He came close to my face, grounded me, and said calmly,“What do you think is wrong?”

I told him immediately.And he said, “Then that’s how we approach it to begin with.”

He followed it with, “If I’m going to listen to you, you have to listen to me. And that means you’re going to intensive care.”

I told him to stop being melodramatic.

He smiled, handed me my phone, and said I needed to call my husband. Apparently I told my husband, “I’m going to intensive care because the doctor is being melodramatic.”My specialist took the phone and clarified that no, he was not being melodramatic — things were serious.

And clearly, I came out the other side. But that moment stays with me because it is the perfect example of what it looks like when a doctor:

• listens

• trusts your insight

• adjusts the environment to help you feel safe

• treats you as the expert of your own body

• centres your autonomy even in crisis

And I need to be clear: at that time, I didn’t have my autism or ADHD diagnosis. No one had language for why I needed predictability, calm, and agency. But he intuitively gave me those things anyway.

Why I’m writing this

Not every doctor is like this. In fact, most aren’t.

Hospitals should meet people where they’re at. They should listen, adjust, slow down, explain, and honour the fact that every patient arrives with their own history, sensory needs, fears, and ways of coping. But the reality is that this doesn’t always happen — and often, it won’t. That’s the part that hurts the most. And it’s why so many of us end up having to find ways to advocate for ourselves that are actually accessible in the moment, especially when we’re scared, overwhelmed, or unwell. Advocacy shouldn’t be a burden placed on the patient, but right now, it often is.

I also want to acknowledge the phenomenal care I’ve received from so many hospital and medical staff over the years. There have been nurses, doctors, specialists, and support staff who have shown me compassion, curiosity, humour, and genuine care — and I’m truly grateful for that. Those moments of being seen and supported have stayed with me just as much as the harder experiences. This isn’t about criticising individuals; it’s about recognising that even with incredible people in the system, the system itself doesn’t always meet patients where they’re at.

There’s also a really important intersection here that doesn’t get talked about enough: the crossover between autistic and/or ADHD women and chronic health issues. The research is clear that neurodivergent adults — especially women — experience higher rates of chronic pain, fatigue, gastrointestinal issues, connective‑tissue problems, and other long‑term health conditions. Australia doesn’t yet publish a neat statistic that captures this overlap, but the pattern is obvious in both the international research and in the lived experience of so many women here. And when we approach care through this intersectional lens — neurodivergence and chronic health — the quality of life and wellbeing of autistic and ADHD women improves dramatically. We’re not “mystery patients.” Our bodies make sense when you look at the whole picture.

Whether you’re a frequent flyer in the medical system or someone facing your first procedure, you deserve:

• predictability

• agency

• dignity

• and a say in what happens to your body

These aren’t luxuries. They’re basic human needs.

And this is why I’m developing a surgical‑advocacy checklist

Because when you’re scared, in pain, sedated, overwhelmed, or dissociating, it is almost impossible to remember what you need — let alone articulate it.

I’m creating a checklist with very specific, practical things people can advocate for before surgery.Not vague statements. Not “just speak up.”Actual scripts. Actual options. Actual sensory and autonomy needs.

For example:

• “The oxygen mask makes me feel claustrophobic. Can I use the nasal prongs/snorkel while I’m going to sleep, and you can put the mask on once I’m unconscious?”

That’s a real request. A reasonable request. A request that can completely change someone’s experience.

And there are dozens more like it — things most people don’t even know they’re allowed to ask for.

Because you are allowed to ask. Because your body is yours. Because you deserve to feel safe.

If you feel comfortable…

I’d really love to hear from others who’ve had to advocate for themselves in hospital settings — the rituals, the boundaries, the scripts, the “this helps me feel safe” moments. Your voice matters here, and your strategies might help someone else walking into their first procedure.