Ciara O'Rourke lifts the lid on the complex reality of living with an invisible illness.
I have lived with migraine for more than twenty years. Within that time I have worked in many different jobs and have come across a lot of different people. Of these, some understand and accept how my condition can impact on my life and the working day, and some just don’t.
I say, “don’t understand”, but sometimes I think it’s because they actually don’t want to understand. It’s so easy for someone to say, “It’s just a headache!” or “Everyone gets headaches, stop overreacting.” This is usually because people don’t want to hear about how migraine really impacts my life. They don’t want to hear that the headaches are just one of the many symptoms that come with a migraine attack.
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.
The stigma surrounding migraine is real
I’d be lying if I said that I can just let those words slide off me. They don’t. They stick and they hurt. I have always been passionate about my job and pride myself on being a hard worker so to hear those types of comments is hard. And what’s even harder to accept is that I know I’m not the only one experiencing this.
I have had some bad experiences with migraine in the workplace over the years. One in particular was really tough and I ended up having to leave. (There were a number of reasons, but the lack of understanding in relation to my migraines was definitely a key one).
I suffer with chronic daily headaches along with migraine so most days I have headache, but I tend to just 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 for me and around my cycle I know I am prone to attacks, so I had asked my employer to schedule my days off around them so I could avoid having to call in sick. It wasn’t enough.
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 that I wasn’t a team player or not willing to put in the work. I ended up leaving because I couldn’t handle the constant negativity and their inability to want to understand my condition.
Feeling like I had to leave was very difficult and took me a long time to get over. I think it’s really important that people living with migraine continue to live their lives to the full, so I did feel like I was defeated at the time.
I am just so lucky that I was able to 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 put a lot of time into educating my colleagues and manager about migraine and all the different effects it can have on 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 during it.
I also think it’s helpful that I have another colleague who lives with migraine, as we tend to buddy up and support each other when needed. She is a great support to me as she has personal experience of what the condition is really like and I think that level of understanding is so important.
The importance of raising awareness
Thankfully, I do believe that things have gotten a little better over the years and the amount of information about the condition has definitely increased.
Twenty years ago when I was first diagnosed there was very little information available that even I struggled to understand my own condition. I felt alone and like I was the only one experiencing these 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 living with migraine, but also to other people who want to know more about this complex condition. There are so many people who suffer with migraine in so many different ways, so it’s awful to think that people’s lack of understanding might be adding to the burden.
My hope is that the more people who speak out about how migraine impacts their lives, the more people will understand that migraine is more than just a headache. My own personal symptoms include headache, fatigue, nausea and vomiting, photophobia, and sensitivity to noise. There are times that a migraine attack can last up to two days and within that time I am unable to get out of bed.
It not only impacts my professional life, but my personal and family life too. I know there are also many other symptoms that impact people’s lives in so many other ways, so let’s educate as many people as possible on the many faces of migraine. This will hopefully encourage more understanding and compassion for those living with migraine in the future.
NPS-IE-NP-00631 November 2022