Migraine at Work

June is migraine awareness month, kick-starting Thursday1st with Migraine at Work day. Today’s article comes with my experience of migraine at work.

It’s only now I write about it that it’s easy to see how migraine can be perceived as a myth. I stayed quiet about it for so long. Told no one. Suffered in silence.

Though I suffered with violent and agonising attacks since 1998 (you can read more about Where it all Began here), they largely happened over a weekend. Did you know that weekend migraine is a specific type of migraine attack that erupts when you rest? Which, for many of us, usually happens after a week at work.

At a guess I’d say I averaged 2-4 a month, with the exception of 2x 18-month periods where I’d experience a few a week over/around my period. Something I directly linked to both forms of contraception I was on at the time. Because I couldn’t get a doctor to listen to me or take me seriously, I didn’t take it seriously either so the extent of what I’m sharing with you here is an approximate guess.

Remember the old health forms we used to have to fill in at commencement of employment? I would go as far as ticking the migraine box even though I was dismissed each time I mentioned it to a doctor.

Photo by Scott Graham on Unsplash

Though work was never really impacted. Mostly over a weekend to the point of agony, then when I did experience them at work (unbeknown to me back then) these were a different type of attack (hormonal) and I could just about function through these. Well, I say function, I’d get home and go to bed with throbbing pain and nausea, sleep it off and repeat the day from baseline all over again the next day (and the next day).

When I look back, I’m not sure what kind of life this is for a week a month (plus the 2-4 weekend attacks), but yey me! I managed to man it up and power on through the day so I could get paid at the end of the month!

From memory, I only remember once, ever, ringing in sick due to migraine (before life took a turn for the worse in my mid 30’s). I was around the age of 20 and I physically couldn’t get out of bed and was puking constantly (into a bin at the side of my bed). I could barely move, eat, speak or drink.

I wasn’t ever able to describe to anyone what it took for me to ring in sick at work, the extremity of the pain or the impairment of what I was living with. But no matter because no one ever asked anyway.

When I told doctors I had migraine triggered by contraception, I was shot down and told no, it wasn’t. In the end I would have to insist they change my contraception. The migraine attacks over my period would stop, the weekend attacks remained.

There must be many accounts of my repeated visits to doctors about the fact I was living with migraine. I later went on to note that never once was it followed up with me that, yes, the combination pill was linked to migraine and that you musn’t take it. Still, why would they? As every single time I continued to visit and tell them migraine was what it was, they’d tell me it wasn’t.

When did it change?

I was proud of my ten year no sickness record. Like everyone else, I thought this was an indicator of good health. Little did I know.

Back in 2014/15, a few traumatic events were unfolding, depression and extreme amounts of stress and pressure ensued. Though something I had lived with and endured for 18 years, there was a big shift in attacks from March 2015 onwards.

Photo by Aarón Blanco Tejedor on Unsplash

Instead of being able to sleep off what was only ever a high level of pain, sometimes agony, the pain element of each attack began lasting longer than several hours at a time. What was a pain and a hinderance to my own personal time, began spilling into work as the pain lasted much longer and became much more frequent and severe.

Initially kick-starting with a full 24-hour period once every fortnight (still undiagnosed) increasing to 48 hours every 10 days. At the time of diagnosis, I was living with pain so severe for the entire 48 hours that no pain relief was taking any effect at all. Rapidly building to 72 hours every 7 days and within months of being diagnosed 72 hours twice weekly, rendering me disabled.

Absence from work shot up from near zero to 15 times in 18 months, all due to migraine. Initially taking the day I physically couldn’t get out of bed off. This one day increasing to 2 days bedbound then 3 days absence at a time.

No one (including me) knew that I was very unwell outside of very high-level pain days. All I had to compare my health to was severe pain and a diagnosis of tension headache from the doctors, so any other day I could get out of bed seemed like wellness to me. As pain and debilitation of illness like this is invisible, every one else assumed I was a well person too. And if I was laid up in bed for the day or days at a time, well, it was just a headache.

The countless trips to the doctors mounted during this time of change. It became more of a struggle to even make it into the surgery. After being completely dismissed for the first 17 years, I was now being told the reason for my alarming work absence was due to tension headache. At no point was I informed doctors only received 4 hours training in headache and migraine. I later found this out as part of my never-ending research with the Migraine World Summit, a platform bringing together world leading experts in the field of migraine disease.

At work, not one absence was followed up by a manager or ever spoken about. So not only did the healthcare professionals have no idea what I was living with, neither did the place I spent most days.

I remember citing sinus headache as one reason for absence. Did you know there is no such thing as sinus headache? World leading experts in the field of migraine now recognise what was previously thought of as sinus headache as all being migraine related. This goes for IBS and vertigo too.

At the end of dedicating my life to work, sacrificing much of myself all in the name of career and “success”, not only did I find myself completely disabled by illness, I was left without any sick pay, mortgage insurance or immediate family to help. Only at this point did a neurologist officially confirm that, yes, it is migraine disease and the world’s 2^nd most disabling disease at that. I was informed that no, there was not any support at all available to me and that it was their opinion that nothing could be done. Later finding out that neurologists don’t receive that much more training than doctors… I don’t know why I was surprised but I was both shocked and horrified to discover this was who I had put my faith and trust in all this time when it turned out, I knew more about what I was living with than they did.

Given that I had a £700 mortgage to pay, I had to find a way to generate an income around being bedbound. A situation I now found myself in up to 24 days a month and a minimum of 6 days for several years.

Alongside breaking the chronic pain cycle (by not accepting that there was nothing that could be done*), I retrained to offer a mobile beauty service so that I could work around illness.

I never offered any set days or times, and I still don’t. My health became my priority and I have since found that everything flows.

Photo by Jernej Graj on Unsplash

Once I broke the chronic fatigue cycle, I trained to be a yoga teacher and offer deeply healing, deeply restorative bodywork massage therapy – a treatment which is now my most popular. Ever since training to help others the way I have been helped, I feel a shift taking place. It’s as if we are waking up to ill health and moving our focus towards health and healing. What are your thoughts on this? Do you feel it too? I’d love to hear them in the comments section below.

*If you’re wondering what the hell I did to break the chronic pain cycle after being told there was no support available to me at all whatsoever and that nothing that could be done, check out Going Against the Grain - the very first blog I wrote for this platform last year. I’m always open to questions so if you have any, let me know.