Stigma survey 2023 - European Migraine & Headache Alliance

I Am a person with migraine, and I’m proud of myself. We are proud of ourselves. The stigma is only in the minds of others until we can free ourselves from it.

Migraine & Stigma Survey 2023

In 2023, the EMHA conducted a comprehensive pan-European digital survey answered by 4.210 people across 17 countries. In order to examinate the origins of stigma surrounding migraine, its impact on patients, and their need for better understanding and support.

The survey covers various topics such as patients’ ease in sharing their stories, understanding of migraine terminology (chronic/episodic/refractory), areas of stigma (civil society, patients, family, work) and ways to address it.

Stigmatization in migraine occurs when people suffering from migraine perceive negative, dismissive, or intolerant attitudes from others due to their condition. This stigma often arises from a lack of understanding about migraine, adding an extra layer of hardship to the already significant pain and suffering.

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Summary of the “Migraine & Stigma” survey results

Survey findings indicate that migraine is more stigmatizing than conditions like dementia, Parkinson’s disease, and stroke, partly because it is sometimes perceived as a mere headache. Those with severe and frequent migraines, especially in the workplace, encounter stigma that triggers emotions of anger, loneliness, and sadness.

Moreover, respondents admitted feeling stigmatized by their doctors, leading some to avoid or delay seeking treatment out of fear of judgment.

The physical limitations imposed by migraine contribute to feelings of embarrassment and exclusion, with some people sensing unwarranted blame.

The study revealed that the language commonly used to describe migraine, such as ‘disabling,’ ‘severe,’ ‘chronic,’ and ‘refractory,’ further fuels stigmatization.

Through better education, increased advocacy and making changes to the lexicon used to describe migraine, we can create a more supportive environment for migraine sufferers.

The European Migraine & Headache Alliance calls urgently for a new ‘official medical language’ (lexicon) to diagnose and refer to the condition, and for greater understanding and education about migraine.