I was diagnosed on 08 August 1997. I was involved in a motorcycle crash — and it was in the hospital, not on the road, that the real news arrived.
Type 1 diabetes. My pancreas had stopped producing insulin. Not because of the crash. Not because of anything I did. My immune system had simply decided, at some point before any of this, to destroy the cells responsible for keeping me alive. The crash just happened to be what got me through the door.
That's the thing about type 1 diabetes that nobody tells you at the start: it doesn't announce itself politely. It arrives alongside something else. A virus, a stressful period, a seemingly unrelated medical event. Then suddenly you're learning to inject insulin, counting carbohydrates, and waking up at 3am to check whether your body has decided to crash your blood sugar while you sleep.
I've been living with T1D for 28 years now. This is what I've learned — for anyone who is just starting.
What type 1 diabetes actually is
Type 1 diabetes is an autoimmune condition. Your immune system attacks and destroys the beta cells in your pancreas — the cells responsible for producing insulin. Without insulin, glucose can't enter your cells to be used for energy. Blood sugar builds up. Left untreated, this is life-threatening.
It is not caused by eating too much sugar. It is not caused by lifestyle choices. It can happen at any age, to anyone. There is no cure. But there is insulin, and with it, people living with T1D live full, complete lives.
That's the medical explanation. The lived reality is more complicated.
What it actually feels like
Managing type 1 diabetes is a full-time job that you never applied for and cannot resign from.
On a good day, it's background noise — a sensor on your arm sending glucose readings to your phone every five minutes, an insulin pump quietly doing what your pancreas won't. You almost forget it's there.
On a bad day, you're chasing a high blood sugar that refuses to come down for reasons nobody can explain. Or you're at 2.8 mmol/L at 3am, shuffling to the kitchen in slow motion, eating glucose tablets and waiting for your brain to come back online. Or you're doing both in the same day. Because diabetes doesn't have weekends.
A few years ago I created a sculpture from 28 years' worth of diabetes supplies — vials, syringes, test strips, lancets, sensor packaging — to show, physically, what living with this condition over a lifetime actually looks like. Not to make a point about suffering. To make visible something that usually stays hidden in drawers, in bins, in the gap between what people see from the outside and what's actually going on. Diabetes is invisible. The volume of kit it takes to stay alive is not.
People living with diabetes make approximately 180 extra decisions per day. What to eat. How much insulin to give. Whether to correct that reading or wait. Whether the trend is going up or down and how fast. Whether the sensor reading is accurate or whether you need to do a finger prick. Whether to eat before exercise, during, after. Whether that headache is a headache or a low. Whether to leave the house with one juice box or three.
It never stops. And nobody outside the community quite understands why that's exhausting in a way that's hard to explain.
The community changed everything
For a long time I managed diabetes mostly alone. You go to your appointments, you do your best, you try not to think about it too much. That worked, more or less, until it didn't.
Finding the diabetes online community — the DOC — changed things. Not because it solved anything medical. But because suddenly there were people who got it. People who understood the 3am kitchen shuffle. Who had opinions about CGM adhesive. Who used the same slang, told the same dark jokes, and didn't need anything explained.
Community doesn't replace a working pancreas. But it makes living without one significantly less lonely.
That's actually why The Diabetic Survivor exists. I'm a visual designer. Art and design are how I process things. In 2018 I started making diabetes-aware illustrations — not to raise "awareness" in the clinical-poster sense, but to connect with people who already knew exactly what was going on and just wanted to see it reflected back at them. Without the fear-based imagery. Without the medical aesthetic. Just people, living with diabetes, getting on with it.
The tech has changed a lot. The fundamentals haven't.
In 1997, managing diabetes meant multiple daily injections, finger prick blood tests, and carrying glucose tablets everywhere. It still means those things for a lot of people.
For me now, it means a YpsoPump insulin pump, a FreeStyle Libre 3 Plus sensor, and CamAPS FX — a hybrid closed-loop algorithm that adjusts my insulin automatically based on my glucose readings in real time. It's not a cure. It's not perfect. But compared to where we started, it's extraordinary.
The technology has changed. The emotional weight of managing a 24/7 condition hasn't. That's worth knowing if you're newly diagnosed. The tools get better. The learning curve flattens. But you will still have days that feel like too much. That's not failure. That's just Tuesday with diabetes.
What I'd tell someone newly diagnosed
A few things, from 28 years of doing this:
- It gets more familiar. Not easier, exactly. But more familiar. The panic of the first few weeks gives way to a kind of competence you didn't know you were capable of.
- Find your people. The DOC is real and it's full of people who know exactly what you're going through. You don't have to explain yourself there.
- Blood sugar numbers are information, not grades. A high reading doesn't mean you've failed. It means your body needs insulin. That's all.
- Ask your care team about technology. Depending on where you are and what's available, CGMs, insulin pumps and hybrid closed-loop systems exist. They're not magic, but they help.
- You will get better at this. Not because it gets simpler. Because you get better.
Useful starting points
- JDRF (Breakthrough T1D) — Diabetes 101
- Diabetes UK — Newly Diagnosed
- T1D Exchange — Community
- #dedoc° — International Diabetes Community
Written by Santiago, The Diabetic Survivor. Visual designer, T1D since 08/08/1997, father, husband, doodler. Based in Scotland. Follow on Instagram @thediabeticsurvivor.