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https://civilservice.blog.gov.uk/2019/09/02/migraine-awareness-week-support-and-understanding-in-the-civil-service/

Migraine Awareness Week – support and understanding in the Civil Service

Migraine trust graphic promoting #Mindful of Migraine

Last year, to mark Migraine Awareness Week, I wrote a blog post here about migraines, what they are and how they affect me, and how I wasn’t going to let them limit my ambition or achievement in my life and work. I also wrote about where you can find advice and support, and generally to raise awareness of this and other visible and invisible conditions.

I was overwhelmed by the response from colleagues across the Civil Service and beyond – both from fellow sufferers and those previously unaware of the severe effects that migraines can have and how they can show support. Colleagues across departments started to email me directly or stop me on Whitehall to thank me for being so honest about what the condition is like and how it directly affects our work and wellbeing.

Migraines are medically characterised as ‘attacks’ because the pain literally attacks the head, and the rest of the body endures acute pain that can last from a few hours to a few days.

I have suffered from migraines since childhood. However, many people are unaware of just how debilitating migraines can be, that in some cases they are recognised as a disability, or that there is still no medical cure for this often lifelong condition.

My own symptoms are an intense headache – as if someone is repeatedly hammering on the same spot on my head – nausea, aura (I literally see flashing lights), and desperate sensitivity to light (thank goodness for polarised sunglasses), sound, smell and touch. 

Common misunderstandings include that the sufferer can control migraines by avoiding what triggers them; and, in my case, that when I’m having an attack I’m drunk – because of the sunglasses, wobbly movement and slow reactions due to the pain. It’s true that alcohol, smoking, too much caffeine and some foods, like cheese and citrus fruits, can trigger a migraine. However, I do not drink alcohol or smoke, only have two cups of tea a day and avoid all food triggers. 

I was initially inspired to write about my migraines because of the reaction of my manager who, after one attack came on at work, approached me and said: “I noticed the temperature change today and was worried you might get a migraine – go home, rest and don’t worry, we’ll handle things here.”

I was deeply moved by this. It made me focus on how great it would be if more employers and work colleagues understood migraines and other invisible conditions; and, crucially, if we all recognised that such visible and invisible conditions, while debilitating, should not limit our ambitions, career and life goals. 

Now, spurred on by the amazing response to my blog I want to further raise awareness of migraines  and seek to debunk the myth that they are ‘just a bad headache’. Also, to highlight that other invisible conditions exist but that sufferers can cope better if we all make an effort to understand them.

So, for this year’s Migraine Awareness Week (1-7 September), I have partnered with Civil Service HR, the Civil Service Disability Champion, Sir Philip Rutnam, and The Migraine Trust to deliver a programme of awareness and how to be an inclusive employer.

This includes  issuing a plethora of digital and hard-copy posters to government departments. These show migraine sufferers sharing their experiences and how they are supported through workplace adjustments, and by understanding and inclusive managers and colleagues. We are also delivering workshops to share how sufferers with invisible and visible conditions are all around us, and how line managers can effectively support employees with migraines to thrive in the workplace.

We should all show empathy towards colleagues with these conditions, but we need the knowledge and mindfulness to do so. That’s what Migraine Awareness Week is all about, and by joining with the Migraine Trust in this campaign the Civil Service acknowledges its role as an employer in supporting sufferers from migraine and helping them manage the condition’s impact on them in the workplace.

We can all achieve our goals if we have the right support and understanding. I have many goals still in my sights, and my migraines, while a reality, will not stop me!

It’s Migraine Awareness Week from 1 to 7 September. If you want more information, please visit the Migraine Trust website.

There are still a few places left at the awareness-raising events. Anyone interested in attending should email disability.inclusion@cabinetoffice.gov.uk by close of play on Tuesday 3 September.

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7 comments

  1. Comment by Allison posted on

    I suffer with chronic migraine, and I am struggling with up to 23 migraines every month. I get just about every type there is - with and without aura; hemiplegic which leave me with facial paralysis and a speech impediment for days; basilar which cause horrendous vertigo; and I can go blind in my right eye for hours at a time.

    Whilst my line manager and team are very helpful at times, I can't help but feel like I am judged for my pain. It's hard, because I often work evenings and weekends to make up the time I lose to a migraine and to the post-migraine (postdrome) effects of exhaustion and brain-drain.

    Despite the sheer volume of migraines, I have only actually taken 5 days (4 occasions) sick off work, using my annual leave and TOIL to make up the time I need to rest and recuperate.

    If anyone in the organisation is championing this from a disability perspective, I'd love to hear from you and see if we can get my organisation to understand more about how to help people like me.

  2. Comment by Danny Marzocchi posted on

    Thank you so much for your blog. I have been suffering from migraines since I was 12-13 years old (now 38) and they are terrible. I know when I am having one because the symptoms I get are: flashing lights, lose feeling in one of my arms, droopy face, blurred speech, nausea, vomiting and the indescribable pain in my head. I tell my family and colleagues that it is as close I can get to, to having a stroke without being an actual stroke.

    For those that don't suffer from migraines, I do feel sometimes that, when I explain what happens to me, I don't think they really believe me and that taking 1-2 paracetamol tablets to ease the pain won't help me get better. There have been many occasions when I had a migraine attack at school or work and have to leave to go home, that I don't remember getting home or how got home, which is a frightening experience.

    Working for the Civil Service, I can say (for me personally) that awareness for migraine sufferers is much better than 5-10 years. I remember having 4 migraines in 10 days in 2014 and my line manager was advised by our department manager that I should be put on report because I had exceeded my sick day allowance. This caused me added anxiety and pressure, which I didn't need at the time. Luckily for me, my line manager was understanding and never went through with it and he got me an OH assessment to help, but it is one of the things migraines sufferers like me have to face.

    If sufferers can get an Occupational Health Assessment, it really helps your current team and future employers understand the suffering you have to endure when having a migraine attack.

    I hope this is helpful and informative to those who read this.
    Thanks.

  3. Comment by Lisa posted on

    Great blog!
    It does help raise awareness on a condition that few people really do understand.
    I've also suffered with migraine attacks myself since my teens I too have aura, light sensitivity, severe pain and all of the other things mentioned, with various weird triggers!
    Understanding and support will go a long way, having myself sat in work with migraines before, not wanting to let anyone down by going home to rest and recover.

  4. Comment by Clare McMenemy posted on

    Absolutely back this up. There are some of us who don't get the terrible headache all the time. I don't. Instead I get devastating vertigo, dizziness so bad I have to hold onto the floor to stop me falling "off", numbness in my limbs, inability to see straight, feeling like the walls and floors are moving, light sensitivity, and the inability to read, write or form words or sentences. Some days it's just vertigo, dizziness and nausea. Other days it's nausea and headaches. And for days after an attack I just feel totally wiped out.

    I have had good support from managers though, even when I really just wanted them to let me be, and I have a raft of reasonable adjustments now which are working towards helping me.

    One thing you didn't mention in this excellent blog is the impact of migraine on mental health. Sufferers (and others who suffer with chronic pain) are much more likely to have depression and anxiety. Especially at work when you feel like everyone is judging you or calling your competence into question. There also needs to be good empathy for any additional mental health needs too!

  5. Comment by Pam Dhillon posted on

    Thank you so much for making people aware - I suffer with migraines really badly and sometimes feel that people think its only a headache and don't understand how debilitating it is especially when your body goes numb, suffering with vertigo, sickness etc...

  6. Comment by Janet O'Brien posted on

    Thank you so much for this. I read this having just had an attack. I do feel there is little understanding how these attacks truly effect our lives. So raising awareness is massive, so that people who suffer can be truly supported and understood. I do feel judged at times especially by managers in the workplace, I think reasonable adjustments like working from home, regular breaks from your computer and just a general empathy would make a big difference to us sufferers, no one chooses to live with pain so please try to support migraine awareness week.

  7. Comment by Gavin Thomas posted on

    Thank you Zamila for sharing with us your personal experience and for promoting Migraine Awareness Week.