Why We Need to Destigmatise Migraine

"It's just a headache – why are you making such a fuss?"

Imagine being constantly questioned on your capability to have a job or a family because of an illness you cannot help. Then imagine being accused of "faking" or "milking" your symptoms because no one can see the pain happening on the inside.

Ciara O'Rourke explores the stigma surrounding chronic migraine and other invisible illnesses.

I have lived with migraine for more than twenty years. Within that time, I have worked in many different jobs and come across many different people. Some understand and accept how my condition can impact my working day, while others don't.

I say these others "don't understand", but sometimes I think it's because they don't want to understand. It's easy for someone to say, "It's just a headache!" or "Everyone gets headaches, stop overreacting."

People don't want to hear about how migraine impacts my life. They don't want to hear that headaches are only one of many symptoms with migraine attacks.

It's much easier to label it as a headache and me as a drama queen, or worse, lazy and not wanting to work! Sadly, I have been called those things many times over my lifetime.

Migraine stigma is a real problem

I'd be lying if I said I could let harsh words slide off me. They don't. They stick, and they hurt. I have always been passionate about my job and pride myself on not letting migraine get in the way of work whenever I can help it.

So, hearing nasty comments wipes me out. And it's even harder to accept that I'm not the only one experiencing this.

I have had some bad experiences with migraines in the workplace. One job was so awful that I had to leave. (There were several reasons, but the lack of understanding about my illness was a key one).

I suffer from chronic daily headaches along with migraine. So, I have a headache most days, but I tend to get on with work. I get approximately 2-4 migraines per month, and on those days, I can sometimes be unfit for work. Hormones are a BIG factor; around my cycle, I know I am prone to attacks. I had asked my employer to schedule my days off around them so I could avoid calling in sick. It wasn't enough.

Stigma led to me being labelled a "drama queen" at work

I was deemed a "drama queen" and "always sick". I remember being quite scared to approach my manager as she would say, "Oh, here comes Ciara with another headache."

She would make my colleagues think I wasn't a team player or unwilling to do the work. I ended up leaving because I couldn't handle their constant migraine stigma, inability to want to understand my condition, and - frankly - bullying.

Feeling like I had to leave was very difficult and took me a long time to get over. I think it's essential that people with migraine continue to live their lives to the full. So I felt especially defeated after this particular blow.

I am so lucky that I could find another post in a place where my manager and colleagues understand and accept my condition.

Don't get me wrong – it took time to get here, and it wasn't always easy. I spent a lot of time educating my colleagues and manager about migraine and how it affects my life. Luckily, I have great co-workers who saw first-hand what I was like during an attack and how I couldn't function.

It's helpful that I have another colleague who lives with migraine, as we tend to buddy up and support each other when needed. That level of understanding is so important.

The importance of raising awareness of migraine and other invisible illnesses

Much of the migraine stigma around today is still based on the old information describing migraine as "a bad headache" and not much more. Thankfully, things have gotten slightly better - readily available information about the condition has definitely increased. 

I could hardly find any information when I was first diagnosed 20 years ago. I struggled to understand my own condition! I felt alone and like I was alone in experiencing migraine’s complex symptoms.

That's why I am delighted that things like Migraine Awareness Week exist. It shines a light on the condition and its many complications. It offers information, advice, and support to those with or without migraine who want to know more about this complex condition.

Living with migraine is hard enough; it's awful to think that a societal lack of understanding adds to the burden.

Actively listening to people with migraine would be a good start

I hope that if more people speak out about migraine, society will finally understand that it's more than "just a headache."

My symptoms include headache, fatigue, nausea, and sensitivity to light and noise. Sometimes, a migraine attack can last up to two days, and I can't get out of bed until it's over.

Migraine and migraine stigma impact my professional, personal, and family life. I know many other symptoms affect people's lives in many different ways, so let's educate as many people as possible on the many faces of migraine.

Hopefully, this will encourage more compassion for those living with this condition.

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The individual(s) who have written and created the content in and whose images appear in this article have been paid by Teva Pharmaceuticals for their contributions. This content represents the opinions of the contributor and does not necessarily reflect those of Teva Pharmaceuticals. Similarly, Teva Pharmaceuticals does not review, control, influence or endorse any content related to the contributor's websites or social media networks. This content is intended for informational and educational purposes and should not be considered medical advice or recommendations. Consult a qualified medical professional for diagnosis and before beginning or changing any treatment regimen. 

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Date of preparation: August 2023
D: COB-GB-NP-00194 (V1.0) / T: COB-GB-NP-00234 (V1.0) / M: COB-GB-NP-00214 (V1.0)