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My Working Life with Migraine – Patient Story

By 14 July 2021MAI News

I come from a family, four generations now, that I am aware of, of strong and resilient migraine sufferers, both men and women. Yet migraine is generally invisible. 12-15% of those where you work, or among your friends and family, suffer with migraine. That is a lot of ‘migraineurs’!

In work migraine sufferers fight these odds to overcome their disability to earn a living, to not let their colleagues, employers, friends, and family, down. In my experience, as a manager and colleague over the past 30 years, migraineurs work incredibly hard, are often high performers and are keen to ensure that what they do achieve, more than makes up for the times their migraine keeps them away from their work. Migraineurs are all around us in the workplace, yet they often do not talk about the condition for fear of being judged, accused of exaggerating, or worse still, lying. They fight to work against the odds, they want to not be in pain, to work every day and participate in life without having to phone in sick or cancel social arrangements.

From a work perspective I have found ways to help myself, as well as those I work with. This insight and the accommodations and understandings I have achieved in my working life, have not happened overnight. I have developed them over a long career and have managed to enhance the outcome with each change of job and employer. Not because the employers are better than each other but because I have more experience in what will help and how to ask for it, as well as by taking an active role in raising awareness about migraine. I also generate opportunities to educate my employers and colleagues in how to recognise and support those suffering with migraine. Finally, I look to build a network of sufferers in the workplace so that we can acknowledge, help, and support one another.

But first a little about myself and my journey as a woman, Mum, Carer, Wife and successful professional, Director of a Global Team covering 16 countries for a large financial services firm.   

My grandmothers, both named Annie, both born in the late 1800’s, used homemade methods to manage their migraine. One was frequently seen with an old stocking wrapped around her head. The other wore a beret, tight, just as she liked it. My mother-in-law Jenny, a nurse in the 1960’s, raised her boys, built a successful business with her husband. A busy life with little downtime. Always there for everyone, except when pain hit, and the dark room called. My sister, nephew and my brother-in–law, all get episodic migraine. Episodic migraine can last from 4-72 hours. Then there is the next generation. Rowan my daughter and my son Morgan, both migraineurs. Each of us has a unique set of impacts from migraine, each has different triggers.

As I heard one neurologist described it, migraine results from having a neurologically hyper-alert brain. A brain which pays more attention to light, sounds, smells, tastes, hormones, food, stress, sleep, patterns, or environments in general, than most brains

To explain, I will tell you a little about my daughter, Rowan’s. Now 27 she describes her brain as being like a computer which is overloaded with too much data. Light, sound, a busy environment, food, all cause Rowan discomfort. Aside from the pain, she describes her brain as feeling muddled, she finds it hard to think, or sometimes speak, coherently. Her type of migraine does not come and go, it has a clear start, one evening a couple of days before Halloween when she was in 6th year, and then continues day in day out. Her migraine has lasted for over 8 years now. But if you met her, you would never know.

I too share the family genes, those related to migraine. I use some of the same tools as those who came before me. I carry a hat and dark glasses, everywhere I go, especially to meetings. I sit at a darkened desk, surrounded by my colleagues who now know the warning signs. It is a bad day when the hat and the dark glasses come out, about 10 times a month. I live in a home designed to restrict light, especially artificial light. As the only non-migraineur in the family my husband gets a lot of use from his mobile phone torch. The modern caveman! 😃

Throughout this journey the staff of The Migraine Association of Ireland have provided our family with incredible support. They educate GP’s and Pharmacists, Sufferers, and employers. They are a lifeline.

Chronic migraine can lead to invisible disability. The impacts are very isolating and the triggers unique to everyone. Mine are stress, lack of sleep and sensitivity to light. The blue frequency that causes most issues is everywhere in phones and computer screens, white light sources such as modern high efficiency lighting and car headlights are a particular problem. The impact is also not isolated to the sufferer. Because of the unpredictability of attacks, planning is a big challenge. Work is prioritised. Social events with family and friends can be a challenge. Migraine is a complex neurological condition Management, Colleagues, Friends, Family, Partners and Children can find it hard to understand. At least now, only in the last couple of years, there are new treatments for chronic sufferers, designed for migraine and with few side-effects.

But also, there are situations in which those with migraine can help themselves. Migraineurs can diarise their attacks, understand their triggers and, sometimes, find ways to avoid them. That is when migraineurs must be brave and make themselves visible. Tell a GP, get help, explain to family, friends, colleagues, and employers.

As I have indicated I have migraine most days and have learned to adapt my environment to reduce the symptoms. Before I join a new company, I now make it known that I have chronic migraine and that artificial light is a major trigger for me. This means that I am generally invited to meet with the prospective employer’s doctor so that we can discuss my specific issues and needs. This results in the doctors making written recommendations as to the accommodations I would need from a working and workplace perspective. Mostly this is simply achieved for me by seating me at a window and ensuring I am not sitting under a light fitting.

It is not always smooth sailing. On one occasion my team changed building, starting 8 weeks of hell for me, from a migraine perspective. Before I relocated, I had asked for the same accommodation as had been provided before. Unfortunately, I got caught between two departments who simply were not used to dealing to this type of accommodation request. Facilities needed Health and Safety to approve, Health and Safety needed me to visit the doctor again. It was summer so annual leave for those I was dealing with delayed getting the light over my desk turned off. In the end the change was not made in advance of the move, and I had to work each day, for 8 weeks, in an environment where the unusually bright lighting felt like someone was slowly pressing an axe through my brain!!!

For those with migraine, triggered by lighting, who work in, or visit, strongly lit environments, there are real issues caused by the type of lighting used and the reflections caused by surfaces. Meeting rooms in the new building were difficult as I could not control the lighting when sharing the room with others. Then there were the rooms with the wooden strips on the walls creating the type of visual pattern which can trigger migraine for many. For months I could not join my colleagues for lunch in the canteen or sit in the coffee dock for a break. Even the doors in the restroom cubicles were bright white and high gloss. There was nowhere to hide from what I experienced as harsh lighting.

Then one day I attended the launch event for an Accessibility Network and heard about how they were looking to improve accessibility in the company for those with disabilities. The Head of Health & Safety, spoke about how his team were working to improve access and in one instance how a refurb allowed them to relocate a canteen area facilitating ease of access for those with mobility issues. I must admit I got quite upset, not something I do often, as lighting in my workplace was preventing me from joining my colleagues at lunchtime. But migraine is a little understood condition, which sufferers do not often speak about for fear of not being believed. I decided I needed to speak up and shared my story and concerns with the Head of Health and Safety, as well as my Senior Line Manager, who was the sponsor of the Accessibility Network. It was clear that they, like many others, where unaware just how prevalent migraine is and how environmental factors, such as light, can trigger an attack. I was able to help them understand my own issues in relation to migraine in the workplace. Their response was wonderful, and they soon arranged to have some simple accommodations made. One truly inclusive change was the reduction of the lighting levels in a small Coffee Dock area. Finally, I was able to join my colleagues for a cuppa, or for lunch.

Also, on a day-to-day basis, my colleagues were wonderful. They knew where the best place for me was to sit, facing me away from exposed lighting. They helped me find the right conditions when we went for meetings, coffee or even lunch. They learned to recognise when I was having a bad day. They looked after me on the bad days, and on one ‘special’ occasion wheeled me and my chair into an archive room whilst I waited for my husband to arrive to bring me home. Strange behaviour you might think, so did I at first, but they had found the only place in the building where the light could be eliminated. Better than that, they watched the door to ensure I did not frighten the wits out of any unsuspecting person looking for an archive box! Again, I disclosed my condition and the reasonable accommodations I needed, when interviewing with my current employer. They have been wonderful setting up my workspace to avoid light and supporting my Remote Access working which, before COVID-19, was up to 3 days a week. My direct manager has changed 4 times since joining this company 2 years ago, but each time I have introduced migraine early to our discussions, alongside updates on my personal and team deliverables. I have always received significant understanding and support as a result which is hugely important since I manage a small global team which works in a 24×7 incident response role. My team is small, only 8 people globally and, other than myself, there are three others suffering with migraine, one at a chronic level.

Between my management and I we have created a supportive and understanding environment where those suffering an attack can take the time they need, as soon as they become aware of the early signs of an attack, to take acute medication and hopefully improve the severity or shorten the duration of the attack.

Then the COVID-19 pandemic struck, changing the working world for most of us. This created one of the biggest, longest incidents my team have ever had to deal with and, like many others, has meant that we have all been working from home for over a year now.

But it turns out my migraine loves lockdown! Not something I had expected but it is true, let me explain.

Lockdown is now a major factor in our lives. It has caused major adjustments in our working and family routines as we take action to prevent the spread of COVID-19. For those who suffer from migraine this has caused big impacts to our well-established daily routines. In migraine sufferers these routines are often vital in minimising our migraine attacks. Migraine loves routine and many uses exercise and avoid their unique triggers to help keep the balance our brain needs. Stress can be a major trigger and for many of us the actions we have had to take to avoid infection have increased our stress levels. Working from home has disturbed our homes and many have had to do so whilst juggling full time care of their children. I have been lucky. I am used to working from home. Because the incident my team manages can happen anywhere and anytime, we could be called on to support at any time, day, or night.  So, working from home is something I have done regularly for many years.  As a result, I am well set up to do so comfortably. My desk is set up with a beautiful view which allows me to focus away from the screen, when I remember.

My routine is better at home. That extra email or late afternoon incident does not mean I miss the train home or a meal. My children are grown and are a major help around the house. But most of all I avoid one of my major triggers by not going into the office…. the overhead lighting. Most types of artificial lighting trigger my migraine and when I am in the office, I must wear special filter glasses to diminish the impact. I have not seen my filter glasses for over a year now and it feels wonderful!

Not something I expected to say but my migraine loves lockdown! Do not get me wrong, it hasn’t gone away, I still get migraine. The diary I keep on my Migraine Buddy app tells me that since March when I was last in an office, my migraine days have dropped from over 60% to less than 50%. It is hard to believe but nothing else has done my migraine so much good as lockdown! If I have learned anything over my 30 odd years of coping with migraine it is that sharing my experience helps me enormously. I chat about my own condition and that of my daughter, to help raise awareness and understanding.

I have been very fortunate that my management and colleagues have listened as I made them aware of the characteristics of migraine and its impacts. They have developed their understanding and now know how to help me. Not trying to hide the condition, being able to have bad days and know that those around me understand, has helped me cope. Talking about it has helped other sufferers, has helped those who can make the process of facilitating, those diagnosed with the condition, achieve reasonable accommodations in the workplace. Understanding and support helps us help ourselves but also gives others the chance to help us too.

Creating a workplace culture is key and we all have a role to make that happen where we work. My goal is to create a space where it is safe to share the fact that we suffer, with an invisible disability and an environment in which we will not be judged unfairly.

Just a year ago now I set up a webpage on our company intranet in work called ‘Migraine Matters’. With over 80 thousand employees globally the membership is growing. It has created a community space for colleagues who are migraineurs, supporting loved ones or friends, who are migraineurs, or simply managing others and who want to know more. From the page they can find out information about migraine from trusted resources, such as Migraine Ireland. We through the page we can share experiences, chat, and share coping tips. Most recently we had a photo competition, to support the #ShadesForMigraine campaign, our 2nd year running articles for the event. It was wonderful to see individuals and teams submit their photos on the site!

Sharing stories and experiences has been a real benefit to many migraineurs who now feel they can be a little brave and have that conversation with the managers and colleagues explaining how migraine affects them and how a little understanding, compassion and support can go a long way to making the workplace happier and healthier for those who suffer from migraine.

After all, migraineurs just want to have a reasonable working life with migraine, to be able to work hard and be judged based on our performance. Like everyone else, we want to meet our potential and bring our ‘whole self’ to work. We just need to be a little bit brave and help educate others so that, with a little understanding and support, we can do just that!

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