This is my last post of the year, and instead of a highlight reel or a neat little recap, I wanted to share something more honest: my top five learnings as a patient.

Not lessons I asked for. Not lessons that came quickly. But lessons that, if I’d known earlier, might have shaved years off my diagnosis and prevented irreversible damage. If you’re navigating unexplained symptoms, rare disease, or a system that keeps telling you to “wait and see,” I hope this helps you push sooner, ask louder, or look elsewhere.

1. Delays Cause Real Harm

Waiting isn’t neutral. Time lost can mean disease progression, worse outcomes, and avoidable suffering.

One of my most debilitating diagnoses could likely have been treated when I was seven years old with physiotherapy. Instead, because of over 32 years of ongoing damage, I now live with complications that may require surgical intervention. And this wasn’t from a lack of trying. Between the ages of seven and twenty-nine, I saw seven different specialists. None of them found the problem. Each missed opportunity compounded the damage already being done.

More recently, while investigating newer symptoms, a specialist suggested waiting three to four months. I didn’t listen. I persisted with my GP. Within four weeks, we uncovered multiple vascular compressions that explained symptoms I’d been living with for years.

For me, "wait and see" never paid off. Delay didn’t protect me. It harmed me.

2. You Often Have to Become Your Own Doctor (and Researcher)

No one knows your body like you do. Learning the language, reading the studies, tracking symptoms — it matters more than it should, but it saves lives. I would still be very much undiagnosed if I hadn’t driven this process myself.

I changed GPs. I didn’t stop researching. And instead of trying to “prove” anything, I found a doctor willing to collaborate with me. That part is key. The turning point for me was finding a GP who listens and works with me. I see her weekly. I bring research, ideas, theories, and questions. And she listens — genuinely. Ninety-nine percent of the time, she orders the tests or writes the referrals for the specialists I want to see.

This shouldn’t be rare. But it is. A good GP isn’t someone who has all the answers. It’s someone willing to help you find them.

3. Care Isn’t Equal Everywhere

Your postcode can determine your outcome. With rare disease especially, care is not equal — not between countries, not between states, and sometimes not even between hospitals in the same city.

For one of my conditions, the best surgeon is in the Philippines. For another, Germany. I haven’t been able to find anyone in Australia who performs the exact procedures I need, in the way my condition requires.

My GP also encouraged me to get a second GP who specialises in my condition, so they could work together on my care. Because of Medicare rules, I now fly interstate once a year to maintain that relationship.

My vascular surgeon is also based in another state. My diagnosis and treatment were dramatically fast-tracked once I stopped limiting my search to my own state.

I’m painfully aware that this level of access is a privilege — one I’m not sure how long I’ll be able to maintain now that I can’t work. And I know this isn’t possible for everyone. But I’ve also seen what’s possible. A friend successfully crowdfunded a trip to Manila for a life-saving surgery. Sometimes the answer isn’t nearby. Sometimes it’s far — but still worth imagining.

4. Second Opinions Are Not Optional — They’re Crucial

Fresh eyes catch missed diagnoses. Second (and third) opinions save lives. If I had accepted my preliminary diagnoses without questioning them, I may not be here — or I may be far more permanently disabled due to irreversible damage. I genuinely don’t understand why second opinions are treated as taboo. We get multiple quotes for house repairs. We shop around before buying appliances. But asking another expert to review your literal body — something you only get one of — is somehow seen as offensive?

What’s the worst that happens?

The first doctor is right, and you gain confidence in your diagnosis.

Second opinions don’t undermine good doctors. They strengthen outcomes.

5. Peer-to-Peer Wisdom Is Extraordinary

Other patients often know what textbooks don’t — yet. Shared experience fills gaps medicine hasn’t closed. A Facebook group was how I first suspected that my pain might be caused by Median Arcuate Ligament Syndrome (MALS). Women just like me described having their gallbladders removed, only to still have symptoms. Over and over, the real issue turned out to be MALS. They were right. And without that suggestion, it could have taken years longer to connect the dots.

Instagram helped solve my most recent diagnostic puzzle, too. Someone posted a video of their tremors — and they looked exactly like mine. My GP and I were completely stuck at that point. That single video got us back on track, led to the right tests, and finally, answers.

Of course, peer groups should always be approached with caution. That goes without saying. But when you’re dealing with rare conditions, these shared clues can be the smoking gun you need to keep going.

Closing Thoughts

This system misses people. Patients find each other.

That shouldn’t be how it works — but right now, it often is.

If sharing these five learnings helps even one person push sooner, ask louder, or look beyond the obvious, then this feels like the right way to end the year. You’re not difficult. You’re not imagining it. And you’re allowed to keep searching.