2,818 hours of migraine – and what numbers don't show

2,818 hours. That's the number of hours I had migraine attacks in 2025. That's almost 118 days. Or to put it another way: a third of the year.

Fun fact (or rather: reality)

Chronic migraine with a high attack frequency (15–20 per month) also affects concentration.

In fact, I had migraine attacks on 189 days in 2025. That's 4,536 hours – or 272,160 minutes . So I must have made a mistake somewhere in my own calculations.

The part of me that has learned to live with migraine takes it calmly. The perfectionist in me weeps quietly.

Figures like these are precise. They are measurable. They are medically relevant. And yet, they say surprisingly little about what it means to live with chronic migraine.

According to the International Headache Classification, chronic migraine is defined as headache that occurs on 15 or more days/month for more than 3 months and that exhibits the characteristics of a migraine headache on at least 8 days/month.

But (chronic) migraine is more than headache, even more than nausea, sensitivity to light and sound, dizziness and all the other physical symptoms. Living with chronic migraine means postponed plans, canceled appointments, and constant uncertainty. It's a perpetual balancing act: Should I go out today or stay home? Should I take medication or wait? Do I have enough energy for a meeting? Is there an exit strategy?

These decisions happen constantly – often invisibly. Chronic migraine is 24/7 management.

When numbers aren't enough

Data plays a central role in medicine and health communication. It helps us understand, compare, and treat. But it reaches its limits when it comes to subjective experience.

What does a "moderate attack" mean in everyday life? What does a day feel like when everything seems possible – until suddenly nothing works anymore? And how do you explain these dynamics to people who don't experience them themselves?

This is precisely where my artistic work begins.

2,818 hours – 2,818 boxes

To counter these abstract numbers, I visualize my migraine.

In 2024, I created a crocheted wall hanging in which colors represent the intensity of the attacks and loose threads make the chaos visible. In 2025, I took a different approach: I translated the hours themselves into a physical structure.

For 2025, I wanted to take a different approach and not visualize a calendar. I meticulously noted how many days I had migraine attacks. Hundreds of small squares made of texture paste coalesce into a single image. From a distance, the surface appears almost empty.

Only up close does it become clear how many individual hours are hidden within. Each box is different: sometimes thick, sometimes flat, with edges or points. Like every hour of migraine. The work process itself was characterized by repetition, patience, and perseverance – much like daily life with the condition.

What it doesn't show are the decisions behind those hours.

A game about decisions

To make precisely these issues visible, I developed a "Choose your own adventure" game in August 2025. Using the self-bound booklet, exhibition visitors could become migraine managers themselves.

The idea is simple: readers are guided through a story and make decisions – similar to everyday life with a chronic illness. Do I go to work or stay in a darkened room? Do I take medication early or hope it will pass? Do I cancel an appointment or try to somehow get through it?

There is no simple "right" decision – only weighing the pros and cons under uncertainty. A key insight for many was the handling of medication: people with chronic migraine should only take painkillers on a maximum of 10 days per month to avoid medication overuse headache. This leads to a paradoxical situation: one is constantly weighing when to treat – and when not to.

This is often difficult for outsiders to understand.

The positive feedback encouraged me to transform the "Choose Your Own Adventure" game into an interactive digital format. I will present the game as part of my exhibition "KOPFLANDSCHAFTEN – An Artistic Approach to Migraine" from June 3rd to 13th, 2026 at the Pop-Up Pavilion in Kiel.

Why this is important

Such formats can fill a gap:

• between medical knowledge and lived experience

• between patients and treating physicians

• between visible and invisible realities

This isn't just about the medical context. Understanding chronic illnesses also plays a major role in the workplace: How do you plan when planning is limited? How do you communicate uncertainty? And what kind of structures can be created that address this?

Artistic and interactive formats create access where pure information is not enough.

Outlook

I am interested in how artistic, visual and interactive formats can be used more effectively in health communication – not as a replacement, but as a complement.

Because to make invisible diseases visible, we need more than just numbers.

We need forms that open up spaces for experience.