If you live with a chronic illness, you already know: your body loves plot twists.

One day everything is manageable, and the next you wake up with a brand-new symptom that makes zero sense — a headache that won’t go away, faintness that feels different from your usual POTS episodes, joint pain that isn’t your “normal” EDS baseline, or something that feels… off.

For years, every new symptom sent me into a Googling frenzy, overthinking, or trying to piece together fragments of information for my doctors — who often weren’t sure either. Recently, I started using AI not for answers, but for organisation, clarity and pattern-spotting. And it has genuinely changed how I handle new symptoms. Below is the exact process I use.

Step 1: Tell It the Basics

I start with an anonymous but honest overview so AI has the right context. Think of it like filling out a new patient form… without wanting to cry.

I include:

• Age

• Gender

• My main diagnoses (only the relevant ones)

• Any surgeries or major history

• My baseline symptoms

Example Prompt:

This gives AI a frame of reference, without oversharing or giving personal identifiers.

Step 2: Describe the Lead Up

Then I tell it the timeline — the same way a specialist would ask during an appointment:

• When did it start?

• What was happening before it started?

• Any changes in sleep, stress, hydration, hormones?

• Any new medications?

• What did my activity level look like?

Example:

If I have measurable data (like HRV from a wearable), I include it.

Step 3: Describe the Flare in Detail

This is where AI becomes incredibly helpful, because doctors LOVE precise language.

I include:

• Location

• Direction (radiating, stabbing, pressure, pulsing?)

• Temperature changes (felt hot/cold)

• Duration

• Triggers (movement, standing, eating, stress?)

Example:

This allows AI to later help translate your lived experience into medical-friendly wording.

Step 4 (Optional): Add Your Doctors’ Current Theories

AI is very good at helping compare competing medical theories — without diagnosing you.

This helps organise information you already have and clarifies what questions to bring back to your care team.

Example:

This is not asking AI “what’s wrong with me?”

It’s asking it to help you evaluate the reasoning, which often feels grounding.

Step 5: Ask AI to Organise, Not Diagnose

This is the part that actually changes things for me.

Once I’ve shared everything, I ask AI to:

• summarise the episode in clear medical language

• outline possible patterns or triggers (without diagnosing)

• draft questions for my GP/specialist

• highlight red-flag symptoms I should monitor

• create a neat symptom log for my health app

Example Prompt:

This transforms chaos into clarity.

Why This Helps So Much

AI can’t diagnose you. But it can support your healthcare by:

⭐ Spotting patterns you might miss

Especially when you’re overwhelmed, exhausted or in a flare.

⭐ Validating or clarifying your doctors’ theories

Sometimes AI helps me understand why a doctor suspects X vs Y — which gives me more confidence and less anxiety.

⭐ Providing evidence-based language

It draws from clinical knowledge, research patterns and medical terminology.

⭐ Making symptoms easier to communicate

Doctors LOVE organised information. You walk into appointments clearer, calmer and more confident.

⭐ Reducing the emotional labour

Chronic illness is exhausting — this makes one part easier. This method has helped me multiple times when even multiple GPs and specialists were at a dead end. It gave us clarity when nothing else was making sense.

AI Disclaimer

AI isn’t a doctor and shouldn’t replace medical care. It simply helps you organise what you already know so you can advocate for yourself with more clarity. And for those worried about environmental impact: asking a question uses roughly the same energy as watching a 10-second cat video — the real issue is how our electricity is generated, not the tools that use it. Every major innovation, from the steam engine to electricity, faced similar questions about its scale and environmental footprint.🌱