The challenges of coping with migraine in life and at work
Co-authored by WBP and Lilly
It seems incredible that there is so little awareness of one of the most common neurological diseases in existence but that is the reality with migraine. The third most prevalent illness in the world, migraine overwhelmingly affects women.
Sadly, millions of people worldwide are falling through the gaps in migraine care. A lack of migraine knowledge and understanding is leading many with the disease to assume they ‘just have a headache’, suffer in silence and carry on.
But migraine is more than just a bad headache; it is a complex neurological disease that has a debilitating effect on people’s lives.
Worldwide, 60% of people with headache disorders are not properly diagnosed, almost 70% do not seek medical advice for their symptoms and less than one in five people with frequent migraine see a GP or specialist (18% and 15% respectively).
Those who do seek medical help often do not receive the correct diagnosis or appropriate treatments. Approximately half of all people worldwide (50%) living with a headache disorder are primarily self-treating and not in contact with any healthcare professionals.
It’s time to address the barriers that prevent people with migraine from receiving the optimal care they deserve. Their migraine care pathway needs to be clear and straightforward.
Most people with migraine experience a care pathway that is fraught with dead ends, where optimal care is often unavailable, fragmented or difficult to access.
Appropriate healthcare can greatly reduce the burden of migraine. But principally because health-care systems’ approach to migraine is flawed, many who need the support most are not receiving it. The roots of this lie mostly in a lack of understanding about the condition and an education failure, at every level, as well as in limited accessibility to appropriate care.
Speaking at the 2020 Women’s Brain Project (WBP) International Forum, Prof. Cristina Tassorelli of the University of Pavia noted that migraine can have a devastating impact on the patient’s personal life, career, health and family. “Headache services must be better organized to address the unmet needs of people living with migraine,” she said.
Prof. Tassorelli also highlighted that treatment requires a personalized approach (precision medicine) because each migraine attack may be different, and each individual responds differently. Because migraine affects three times more women than men, taking account of sex and gender aspects is crucial for tailored treatments.
Work and migraine
In addition to the physiological burden of migraine, many of those who have a diagnosis face stigma and barriers in the workplace. “The fact that so many women are affected by migraine, and it interferes with their career, needs to be more widely recognized,” Dr. Maria Teresa Ferretti of the Women’s Brain Project said.
The WBP Forum discussion panel on migraine, sponsored by Lilly, also included Elena Ruiz de la Torre of EMHA Spain who works with migraine patients. In her experience, one of the first questions newly-diagnosed patients ask is: how do I explain to my boss what migraine is?
At the WBP Forum, Ms Ruiz de la Torre presented the results of a survey on migraine at work with a sub-analysis on female responders. This graphic shows the response of the women who participated in the survey.
The survey highlighted the struggle and resilience of migraine patients in the workplaces and how their disease negatively affects their ability to work during attacks (but not when they are well!). Migraine sufferers need to adapt their work conditions but only sometimes received support from their employer. “Public awareness and work-related outcomes for people with migraine must improve,” Ms Ruiz de la Torre said.
A person with migraine is absent from work, on average, for nearly six days every year due to their condition. When they return to work or school, they still can’t perform at their best. Stigma causes additional burden and stress for people with migraine impacting their productivity and quality of life.
More needs to be done to address the burden of migraine in the workplace, and improve the work-related outcomes for people with migraine.
Putting on a brave face
Migraine has a major economic impact on societies due to lost work productivity and high healthcare resource utilization. Indirect costs of headache vastly outweigh direct treatment-related cost.
To minimise the ongoing economic burden of migraine, policymakers need to ensure appropriate funding for high quality migraine care to improve outcomes, specifically work-related, for people with migraine, the WBP Forum panel agreed.
People living with migraine learn to hide their pain and the effects of the disease, often pushing through and putting on a brave face. In fact, research shows that more than 60% of people diagnosed with migraine try to hide the true impact of it from those at work or school and 55% believe the disease has affected their career goals.
With better care pathways and awareness on the part of employers and wider society, this situation could be avoided. Tackling the stigma of the disease is an urgent first step to help the millions who are currently falling through gaps in migraine care.
WBP and Lilly are proud to work together to promote awareness of the unmet needs of men and women suffering from migraine, and to advocate for precision medicine approaches. We acknowledge Lilly’s support as corporate sponsors.