“Migraines are headaches when you don’t actually have a headache”: migraine stereotypes and their impact

European migraine survey

The European Migraine and Headache Alliance (EMHA), in collaboration with other institutions, recently conducted a large-scale survey to explore how migraine affects people’s lives. Over 4,200 people from 17 European countries participated, sharing insights into the effects of migraine on their professional lives, day-to-day living, family relationships, friendships, socializing, and life in general. The main purpose was to find out how migraine patients think others see them, and how this affects their lives.

Migraine and career advancement

More than 60% of respondents said their condition affected their employer’s assessment of their work performance. As many as 43% – almost half – said they tried to hide their condition at work, apparently out of a fear of stigmatization. They report that their condition is often not taken seriously, so they prefer not to mention it to co-workers. At the same time, many patients admit struggling to manage their workload. Among part-time employees, 80% identify migraine as a significant barrier to career advancement.

Doctor knows best – right?

Although you might expect a higher level of migraine awareness and understanding among healthcare professionals, the findings of the survey suggest otherwise. It seems that many doctors and other healthcare professionals are poorly informed about migraine. Many patients in the survey feel that their suffering is not adequately acknowledged. Talking to the doctor often feels uncomfortable because they feel they have to prove how much their condition affects their lives. As a result, 35% of patients avoid or delay seeing a doctor. Three-quarters of respondents do not feel taken seriously in this setting either. Migraine expert and study co-initiator Peter Goadsby, a Professor of Neurology at King's College London, says these findings should be a “wake-up call” for everyone in the medical field who works with migraine patients. People living with migraine deserve to be taken seriously, and healthcare professionals need to acknowledge how life-altering migraine can be, Goadsby says.

Migraine stereotypes

Stereotypes of people with migraine are widespread, and migraine sufferers encounter deeply ingrained prejudice in many areas of life. Women are disproportionately affected by migraine and therefore more likely than men to encounter invalidation and trivialization of the suffering and limitations associated with it. Gendered narratives and dismissive attitudes are common in the workplace and elsewhere, to the point of blatant sexism in some cases. Migraine is often wrongly linked to “psychological instability,” which makes people with migraines feel worse about themselves. Comments like "It’s just a headache" and "A convenient excuse to get out of work” are all too frequent. This shows how deeply ingrained old prejudices about migraines still are in many people’s minds, and highlights the strong influence of gender stereotypes.

Internalized stigma

Many people with migraine internalize the stigma, meaning that the false labels and misrepresentations to which they are exposed become part of their self-image. Migraine patients see themselves as less capable than others or even as incompetent. With their self-esteem diminished in this way, people living with migraine may feel unable to take on responsibilities or leadership roles in their careers or in civil society. The result is that many people living with migraine withdraw into their shell, creating a cycle of isolation that can be hard to break.

What needs to change?

Effective medical training

Migraine is a complex neurological disorder with manifold consequences for the individual. The approach to migraine and people living with it must be reconsidered and fundamentally changed. A sensitive and respectful attitude from others is essential to the well-being of people living with the burden of migraine, starting with those who bear a professional responsibility for the support and care of people with migraine. A World Health Organization (WHO) survey for example indicates that medical staff in three-quarters of the countries studied do not receive sufficient training in the most common headache disorders to provide effective treatment for those affected. In view of the high prevalence of these headache disorders, this is a major problem affecting the lives of countless people.

Building trust between patients and doctors

Internalized stigma is the main reason stopping people with migraine from seeking professional help. The key feeling involved is the fear of not being taken seriously. The only way to address this issue is by establishing a relationship of trust between patient and healthcare professional, providing a safe space in which to develop the best possible treatment in a collaborative process. Another important objective is to help patients to not see themselves and their condition as a burden to others or blame themselves for their illness.

Changes in the workplace

The workplace, where stigmatization and exclusion are felt most acutely, must become a space where people with migraine are treated with respect and care. Workplaces should not only be supportive on a human level but also practically designed to be “migraine-friendly” by minimizing and avoiding triggers and risks wherever possible. Specifically, this includes avoiding stark changes in lighting conditions, reducing noise and odors, enabling regular breaks and recovery periods, and ensuring good air quality. Since a consistent supply of energy to the brain is critical for people with migraine, workplaces should provide opportunities for regular meals. Additionally, offering flexible working hours and locations can help reduce stress and time pressure while enabling a person to go to work after a migraine attack, for example in the afternoon. Lastly, a mindful and considerate workplace culture can help prevent stress-induced migraine attacks.

Rethinking public perceptions

The media and the public can play a big role in reducing stigma by avoiding common migraine stereotypes and refraining from trivializing the condition, which only reinforces misconceptions. Instead, people living with migraine should be encouraged to demand understanding of their situation and proper treatment. Preemptive resilience of this kind can help counteract shame and self-doubt on a lasting basis.