The Migraine unveiling: Bringing the invisible disability to light

Globally, headache disorders affect approximately 40% of the population,
or 3.1 billion people in 2021.1

A migraine attack goes beyond a severe headache; it is a constellation of symptoms that may include neck pain, nausea, dizziness, visual disturbances and sensitivity to light, sounds and smell among a variety of other manifestations.2

Migraine Awareness Week 2024

Dr Victoria Wallace, Consultant Neurologist at Kingston Hospital UK, also sees patients at St Georges Hospital London, one of the UK’s busiest Migraine specialist centres: “Migraine is not just an intense headache – migraine is a well-defined brain disorder reaching far beyond a headache. Migraine can manifest is several ways as it affects different parts of the brain – multiple sensitivities, dizziness, nausea, cognitive changes and severe pain that can stretch to the neck area. A migraine attack can last for days with symptoms manifesting in both the lead up to and after the migraine attack – I see patients who literally can’t function for half of the month due to repeat migraine attacks.”

Despite migraine being described as early as 3000BC, specific treatments for the disorder were only developed in the 20th Century. Part of the reality of living with migraine is the stigma that continues to be associated with the condition. Early eighteenth-century British literature demonstrates how healthcare professionals began the cultural associations of migraine with weakness and hysteria (often aimed at women), describing migraine as a problem that only affected people in the socioeconomic upper class who had particular qualities associated with a “sensitive” or “nervous personality.”3

The reluctance to accept the true impact of migraine on patients continues to this day. Rob Music, CEO at The Migraine Trust, is clear on the impact of continued stigma towards migraine: “We did some research last year in the UK looking at the impact of migraine in the workplace. One in three migraine sufferers said they had to go from full-time to part-time work. Another 25% had to leave their jobs as their managers and colleagues simply didn’t believe them or appreciate the seriousness of the disorder and the impact it has. Less than half the companies we looked at took reasonable adjustments. The fear of losing your job is real for a migraine sufferer”.

Such statistics are staggering given that migraine affects 1 in 7 of us, with a three-times higher prevalence in women than in men.1-3 Critically, data from 2019 showed migraine was the second leading cause of disability among men and women across all age groups, and the leading cause of disability in women aged 15–49 years (expressed as years lived with disability).4

Dr Victoria Wallace diagnoses between 3-4 new migraine patients every week and migraine patients make up around a third of her patient load in the neurology clinic: “Migraine is without a doubt the most prevalent disorder I treat as a neurologist.”

The high prevalence of migraine carries a significant personal, societal and economic cost. In the UK alone, migraine is estimated to cost 43 million days of missed work and education annually. The economic impact in terms of broader loss of productivity is frightening. According to Rob Music from The Migraine Trust: “Part of the data the Work Foundation report looked at in 2018 was was the true loss of productivity in the UK alone due to migraine is estimated to be as much as £9 billion annually.”5

The impact of migraine on quality of life is equally devastating: The Migraine Trust found that in the UK 89% of people with migraine feel it has significantly affected their mental health. And the impact goes beyond the individual, with around 60% of people living with migraine feeling it has negatively impacted their relationship with their partner or spouse.

Whilst in recent years there has been an increased awareness and acknowledgement of the impact of migraine on the individual, both Rob Music and Dr Victoria Wallace reflect that there is still more to be done.

Most of patient impact data have been funded by charities such as The Migraine Trust signifying an opportunity for government to more holistically assess the true impact of migraine on quality of life, ensuring that sufficient resources are invested in understanding how to mitigate the impact of this hidden disability.

Migraine Awareness Week 2024

In the next blog we will explore how new treatments in recent years have heralded a new dawn within migraine treatment – but that we need to continue to push for access to realise the true revolution these therapies can offer.

In the meantime, we all have an opportunity to educate ourselves on this debilitating disorder – as employers to offer the support and care we owe to our affected employees and as legislators to ensure we continue to improve access to new treatments, so that no migraine patient is left behind.

Author – Julie Munch Khan, PhD

September 2024

  1. https://www.who.int/news-room/fact-sheets/detail/headache-disorders#:~:text=Globally%2C%20headache%20disorders%20affect%20approximately,until%20the%20age%20of%2080.
  2. https://www.uclahealth.org/news/publication/migraine-treatments-what-are-latest-advances
  3. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8647964/#:~:text=People%20with%20migraine%20often%20describe,in%20the%20clinic%20%5B21%5D.
  4. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9888545/#:~:text=Migraine%20affects%20about%2012%25%20of,women%20and%206%25%20in%20men.&text=Globally%2C%20in%202019%2C%20migraine%20was,as%20years%20lived%20with%20disability).
  5. https://www.lancaster.ac.uk/media/lancaster-university/content-assets/documents/lums/work-foundation/SocietysHeadacheTheSocioeconomicimpactofmigraine.pdf