I am 26 years old and have lived with migraine since the age of 19. When I first experienced migraine, I assumed this was due to having a stressful job. When I eventually left this job, I was hopeful the persistent headaches and migraine attacks I was experiencing would ease, but they worsened.

From around the summer of 2021, they started to take over my life, I went months where I had either a headache or migraine symptoms every day and I went from being a very active person to not being able to do much at all. Eventually, I was diagnosed with chronic migraine in February 2022.

The symptoms I get during a migraine attack are very painful. I get sensitive to noise and light and I need to lay down in my room, although depending on where I am and what I am doing, that’s not always possible. As well as the head pain, it makes me feel very fatigued and I get much more anxious and stressed.

You feel like you’re letting people down

I regularly have to cancel plans with family and friends, and I can’t go anywhere that is too loud or crowded because loud noise and stress are two of my main migraine triggers. It’s common for me to have to miss special events with family and friends. I get very anxious when making any kind of plans because I know there’s a chance I will have a migraine attack and have to spend the day locked up in my bedroom with the curtains closed as I have countless times. You feel like you’re letting people down. Chronic migraine has also triggered serious mental health issues and lack of sleep is a big problem for me (putting it lightly).

My biggest passion is refereeing which I have proudly done since I was 15, and this is just one of the things that chronic migraine has massively affected – I am still an active referee however I had to step down from operating as a Level 4 where I was officiating at Semi Professional level and hopeful of progressing further. I referee locally when my migraine and mental health allows, but it’s not nearly as much as I once could.

The biggest help is the emotional support my family gives me

I am now on a preventive treatment for migraine that’s finally provided me with some relief after trying several other preventative medications prior that failed. I still get a lot of attacks, but I am very grateful to have finally found at least some relief.

I can’t stress enough, the support I have from my family and friends has literally been lifesaving. Living with this disability, that is not taken seriously enough, has been life changing but I am incredibly grateful to the heroes in my life that keep me going (literally). They support me not just when I have a migraine attack, but with my mental health problems too and they have been severe recently. There are practical things, like when I have a migraine my step mum will cook a meal for me and help with other household tasks which I am unable to do. She also comes to most of my appointments which is helpful because I get very anxious in hospital settings. But I would say the biggest help is the emotional support my family gives me; they are always there for me which means so much to me.

For me, life is about the little wins. Yes, I am limited in what I can do, and it does get me down a lot but I do have some good days. Catching up with family with a cup of tea, playing with my little nephew and watching Rugby League are things that mean the world to me. My ‘good days’ now look a lot different to what they did a few years ago, but I always remain grateful – no matter how tough it gets.

People have said to me: ‘You’re still young, you’ll be alright’

Why am I sharing this? Well, to raise awareness about migraine and how it is not just ‘a headache’. It can affect every area of your life, it certainly has mine. I regularly have to do things whilst in pain and I find myself ‘playing down’ symptoms to people because I don’t want to trouble them. I have been out of work for a few years now and I have been overlooked when applying for jobs due to my disability which makes my future very uncertain. I won’t make this story political, but people with migraine deserve better in so many areas and I hope change is on the horizon. It took me a very long time to get access to the healthcare I needed from the NHS which caused even more stress and anxiety.

I’d also like to highlight the stigma around migraine. As a 26-year-old I’ve found it difficult explaining to people about my condition – especially being relatively young and the fact you cannot visibly see this disability. People

have said to me: ‘You’re still young, you’ll be alright’ as if this is just a minor setback for me and because I am 26 some assume it can’t possibly be that bad. It’s an uncomfortable conversation to have – I usually go along with it and change subject.

Finally, chronic migraine and what comes with it has changed my life, but it hasn’t changed me. I am still me and I still try to be the best version of myself. I am so proud of how resilient I am and how I never give up.

I really hope anyone reading this may have gained some insight into what living with chronic migraine is like. Thank you so much for reading my story.