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Civil Service

Reflections on Migraine Awareness Week

Set of five posters with personal stories of living with migraines
Migraine awareness posters

In early September the Civil Service partnered with The Migraine Trust to mark Migraine Awareness Week. Key activities included:

  • hosting two workshops delivered by The Migraine Trust for HR professionals, line managers and employees
  • a 500-building poster challenge, involving 5 posters featuring civil servants with lived experience of migraines, sharing their personal insights and tips on how to support colleagues with this condition
  • using social media to promote individual department activities, with the hashtags #MigrainePositiveCS and #MAW2019.

I hope you had the opportunity to attend one of the events or view the posters, which have been prominently displayed in government buildings across the UK. In one business unit, Companies House, they arranged for the posters to be displayed on electronic notice boards in their main buildings across the UK, including Belfast, Edinburgh and London.

This all stemmed from a fantastic personal story blog post by Zamila Bunglawala, which struck a chord with many people. Zamila highlighted how common migraines are, that we need to do more to raise awareness of the impact they can have and of the support available. She has followed this up with another excellent migraine blog and has been instrumental in initiating this year’s activities.

I have learned lots from Migraine Awareness Week, such as:

  • If you don’t experience migraines, you will know someone who does. If you think you don’t, it just means that someone you know hasn’t shared it with you. It is the third most common disease in the world, with current estimates suggesting 1 in 7 people live with the condition.

  • More than three-quarters of people living with migraines experience at least one attack each month, but the number of attacks can vary considerably. Those with chronic migraines will have at least eight migraine attacks a month.

  • There are many different triggers for a migraine attack, such as stress, hormonal changes in women, changes in sleeping patterns, dehydration, bright lights, loud sounds and particular foods, to name a few. 

  • Line managers and organisations can put in place many simple adjustments to help people with migraines, such as changes to working patterns, lighting, adjusting text/anti-glare on computer screens, providing quiet rooms, installing water-coolers and adjustments to attendance absence trigger points.

To bring these learning points to life, I would like to introduce Linda, who featured on one of the posters.

Linda’s story

Head and shoulders of Linda, who lives with migraines

I work in the Home Office, and in 2014, in my early 50s, I developed hemiplegic migraines. It was quite a shock, as I had never had one previously. 

My mother had always suffered migraine attacks but not hemiplegic migraines. It was initially suspected that I had experienced strokes, as I suffered weakness in my arm and leg, tingling in my face, speech disturbance, severe nausea and awful headaches. I was hospitalised a few times but, as I didn’t always have a headache accompanying the symptoms, this masked the fact that I had developed migraines. I was sent to a specialist stroke unit and finally received my diagnosis in 2016. It came as a relief because, although migraine attacks are frightening and debilitating, it was reassuring to know that my life was not about to end.

When I have an attack, I cannot do anything at all, including listen to music, read or watch TV. I have to lie in a darkened room and “wait it out”. So, naturally I cannot function in the workplace. When the migraines began I felt terribly guilty about taking time off work and that others would think I was making a big thing out of a headache. My managers were supportive, but it was still a difficult time for me. I was hitting sickness trigger points and, on one occasion, I received a warning, which made me more stressed and more prone to migraines.

The turning point was receiving my diagnosis which enabled me to research my condition and talk to my manager with confidence. Prior to that it felt that taking time off was unjustified, which was very upsetting as I had no control over the attacks. After the diagnosis I had several occupational health reviews which I welcomed because they helped to identify workplace adjustments that helped me to manage my condition. I can now work from home some of the time, reducing driving time which in the winter due to car headlights can sometimes trigger an attack, and allows me a quieter environment to work in. I also had my sickness trigger consideration point changed to take account of my condition.

I am fortunate that when a migraine is coming on I get a sharp distinctive earache in my left ear which means I can take medication which can sometimes head the migraine off. 

I have had a number of line managers during the last few years and not all were as supportive as my current one. They tried to be supportive but their main concern seemed to be applying the sickness policy. My current manager has embraced putting in place adjustments to make the working environment fully accessible, and has brought other managers onside by helping them to understand that this is something I have no control over.

It has taken me a long time to feel as though I don’t have to apologise for my condition all the time. However, with the right support, both at home and at work, I have been able to accept my condition for what it is and manage it as effectively as possible.

For me, this condition is a disability that is not visible until I experience an attack. Managers and colleagues need to recognise this, and the only way we can make that happen is to explain and speak up. We should stop being the person always apologising for something we haven’t asked for and can’t help having.

I want to thank Linda and Zamila for sharing their personal stories and to the other colleagues who featured in the poster campaign. Also, I would like to thank the

Migraine Trust for their fantastic support in helping us to highlight the workplace challenges that migraine sufferers face, and to raise awareness of what we as employers and colleagues can do to help.

If you experience migraines and need assistance at work, I would encourage you to speak to your line manager or your Workplace Adjustment Team about the adjustments you may need. 

You may also find it helpful to read the useful information and guidance available on the Migraine Trust Help at Work Toolkit.

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  1. Comment by Claire Smith posted on

    I found your story very informative and disabilities can be applied to other illness such as Diabetes and Asthma both of which I suffer with and both of which can in their own ways be debilitating and having to constantly worry about taking time off can have an impact and as you say some managers are more concerned with the attendance policy than your well being. I also suffer with various other health issues which limit the kind of work I can do but I have been lucky in that I can approach my line manager and discuss my health issues to a certain degree and some reasonable adjustments have been put in place. Like you I would encourage people to talk to their manager if they feel they cannot cope for what ever reason.

  2. Comment by Sue Porter posted on

    Having been diagnosed as a sufferer of chronic migraines only last week, this landed like balm to my soul. Linda's story resonates with me in many ways and it gives my feelings some credibility. As someone who also lives with anxiety and depression some of my symptoms have been misinterpreted by medical professions and me - I had no thought that the almost continual headaches I have suffered for some time now might be related to anything other than my mental health.

    Whilst I have some way to go before I have identified my triggers - headache diaries are actually a thing - and I'm not a suitable candidate for beta-blockers so there will be no relatively easy prophylactic fix, I have hope that I will get there. I also know I will struggle every time I have to say I am not fit for work and to hear that sickness trigger consideration points can be reassessed is mind-blowing. Despite having my MH identified as a disability because of it's chronic and long-standing nature, I never knew that.

    I'm still in the early stages of understanding my condition. What is most clear to me is that we need to do more to inform managers and HR and enable a much more inclusive and individualised approach. My biggest fear is that I have to try and mask the symptoms, turn up to work and make a mistake because I'm worried about taking 'another day off'.

    I'd be very happy to join any departmental wide discussion about how best we can spread awareness.

  3. Comment by Annette Henley posted on

    Thank you raising awareness of this hidden disability. It's so interesting that Linda's story includes the fact that some managers are more concerned about applying the attendance policy than dealing with her welfare in the work place. I think that there is a need to reconsider attendance management as it often seems to be applied to staff with disabilities and leads to a sense that inclusion does not include disability

  4. Comment by Clare McMenemy posted on

    Thank you so much for supporting this. I'm a sufferer and my migraines go regularly from being episodic (clear days between attacks) to chronic (no clear days ever). Oddly, I rarely have the terrible headache (although when I do, I do wonder why people can't see the socking great ice axe sticking out of my right temple). Instead I suffer with vestibular migraine (or vertigo) which causes vertigo, imbalance, nausea, dizziness, and difficulty with my vision. It's debilitating in its own way. I've been quite lucky in getting support, although the latest run in with OH was quite upsetting, being a bit more confrontational than was necessary. It's important that Management also understand the negative impact on mental health and increased stress that comes with suffering from an incurable, long term chronic condition.... sometimes managers add pressure and stress without really meaning to.