Migraine is far more than just a headache, so why is it not taken seriously?
If you live with migraine, you’ll be familiar with some of the symptoms of a migraine attack - intense head pain, problems with your sight such as seeing flashing lights, being very sensitive to light, sounds and smells, fatigue, feeling sick and being sick are just a few.
You’re probably also familiar with hearing people who don’t live with migraine using it as an excuse; “I’ve got a migraine; I can’t come out tonight”.
Migraine is a very common condition affecting one in seven people or 10 million in the UK. There is no such thing as a ‘typical migraine’, and it affects people in different ways. Some experience infrequent and manageable attacks; others live with debilitating symptoms that can make carrying out day-to-day functions, including work and family life, impossible.
Even though it is common, migraine is incredibly misunderstood, as many people hear ‘migraine’ and think ‘headache’. As a result, those living with it are often not taken seriously or believed, including in the workplace and when trying to access healthcare.
At The Migraine Trust, we regularly hear from people who feel isolated, anxious and even desperate. Migraine is consistently overlooked by governments and policy makers, and our research has highlighted huge inconsistencies in migraine care across the UK. We often hear from those who have had their symptoms dismissed or who feel like they are having to fight for access to treatments and preventative medicines.
One Migraine sufferer told us ‘Migraines are heartbreaking for migraine sufferers and affects all areas of life. From always feeling like you’re letting people down, not knowing if a plan or event made will be able to happen (until it happens), thinking about family, feeling like you are a shadow of your former self, and feeling guilty about missing work – it never goes away. More awareness and understanding of migraine is essential, and so is effective treatment and education.
So, what needs to change?
Firstly, migraine needs to start being taken seriously. It has a debilitating impact on millions of lives across the UK, and we want the new Government to recognise the condition in major national and local health strategies. This includes those looking at long term health conditions and women’s health, as three in four people with migraine are women. There are now several newly approved migraine treatments, which have been transformative for those who have access to them. However, low levels of migraine knowledge in primary care, along with a lack of investment in migraine specialists and clinics mean many patients are not receiving the care and treatment when and where they need to.
Secondly, there needs to be better support at work. As another Migraine sufferer told us “I’ve had really mixed experiences at work. I’ve had some really supportive colleagues and managers who would let me have breaks, make sure there were dark rooms I could go to, would cover for me especially when loud noises and things were potential triggers. I’ve had other experiences which have been awful with managers who don’t understand. One tried to force me to complete my hours during a migraine. I was being sick, and my vision was
going.”
In a survey by The Migraine Trust, 29% of participants said they had moved from full-time to part-time work due to their migraine and 25% had left a job because of it. 43% felt their workplace had not believed them when they had taken sick leave due to a migraine attack and 34% had felt discriminated against at work.
People with migraine often need very little help from their employer, but this small amount of support can be decisive in enabling them to work effectively. We support employers through training, resources and our Workplace Pledge so that they can start the journey of better supporting their staff with migraine.
Thirdly, we need to talk more about the impact of living with the condition. As well as the physical pain, over a third of people who use our support services report a decline in mental wellbeing from living with the condition, and many are dealing with impacts such as isolation, guilt or fear.
By changing the perception of what it means to live with migraine, the faster those living with it will have the support and understanding they need.
Most importantly, if you live with migraine, you aren’t alone. At The Migraine Trust, we understand what living with migraine is like and we have information and support to help you understand and manage the condition.
This year during Migraine Awareness Week, we are focusing on the many ways in which migraine hurts. Find out how you can support us here.