A survey of 4,000 Europeans reveals the impact of migraine stigma on the daily lives of patients suffering from headache attacks.
- Migraine is characterized by repeated attacks manifesting mainly as painful headaches (headaches). This neurological disease affects 15% of the world population, including 7 to 10 million people in France.
- Three-quarters (74%) of people affected by migraine consider that caregivers “do not take their illness seriously”.
- The researchers call for a “reevaluation of the language” surrounding the diagnosis of the disease. And for good reason, 65% of people with headaches feel stigmatized by terms like “disabling”, “chronic” or even “refractory”.
“More stigmatizing than dementia, Parkinson’s disease and stroke.” People suffering from migraine, a neurological disease that affects between seven and ten million people in France according to Insermfeel discriminated against in all aspects of their daily lives.
This is the conclusion of a vast investigation of the European Alliance Against Migraine and Headaches (EMHA) and the French Association Against Cluster Headache, carried out in 2023 in 17 European countries with more than 4,000 respondents – “migraine sufferers” or not.
Headaches: for 74% of patients, doctors do not take their illness seriously
The stigmatization of migraine, which manifests itself in negative, dismissive or intolerant attitudes on the part of others towards sufferers, “often results from a lack of understanding”, according to the study. No less than 26% of non-migraine participants believe that this pathology “is nothing more than a severe headache.” Migraineurs themselves (93%) believe that society as a whole does not understand the disease well.
This feeling of stigma is reflected even in doctors’ offices: while three-quarters (74%) of people affected by migraine consider that caregivers “do not take their illness seriously”, 35% of them delay or avoid consulting a doctor “out of embarrassment and fear of being judged.” “The data from this study are a wake-up call for clinicians, as they highlight an important dimension of the burden that migraine represents for our patients”notes Peter Goadsby, professor of neurology at King’s College London, who participated in the work.
Migraine can also be a burden in the workplace: for 62% of migraine respondents, it “influenced the way their employer evaluates them”. So much so that almost one in two patients (43%) have chosen not to inform their employer of their condition, even though crises can affect their professional abilities.
Migraine: we must redefine the language around diagnosis
According to EMHA, the fight against this stigmatization, which is a source “anger, loneliness and sadness” for those concerned, must go through a “more effective communication on impact” of migraine, in order to facilitate understanding for families, colleagues, caregivers, etc. This is why researchers are calling for a “language reassessment” that surrounds the diagnosis of the disease. And for good reason: 65% of people with headaches feel stigmatized by terms such as “disabling“, “episodic“, “chronic” or “refractory“. With this in mind, EMHA plans to introduce this year “a new categorization system to effectively express migraine severity”.
