When I was nine, I went to the medical room at school on a Monday afternoon because I had a weird sensation in my hand that I had never felt before. By the time I got to the medical room, however, the sensation had gone away and I told the nurse that I was fine. Then, while out on the playground, I got an excruciating headache and the nurse decided to send me home. My final thought before heading home was Thank God, I don’t have to do the spelling test this afternoon. Trust me, a week later I would be wishing I could have taken that spelling test. A few hours later, after getting slurred speech, not being able to comprehend what anyone was saying and vomiting countless times, my mum, frightened by the sudden illness that had come upon me, decided to call an ambulance. Over the next week, I had many different tests done due to the doctor’s fear that I had meningitis. All the tests came back clear. Finally, I was diagnosed with migraine.
Migraines are a neurological condition that I inherited from my dad, where I am subject to migraine attacks without warning. This starts off with an aura, where parts of my body go numb and I lose parts of my vision. Then, I get an excruciating headache for several hours with vomiting. I lose my ability to write, talk and understand what people are saying. I become confused. After anything between 4-8 hours of this, the headache goes away and I’m left with a “hangover”. I am lethargic and my processing ability is slowed, making it hard to read, write or process sensory information.
I have spent the past 10 years trying to manage this condition, which hasn’t been easy. Many people think it is easy to find a trigger and a solution to prevent migraine attacks. It isn’t. My mother and I spent hours trying to work out if it was a food triggering it, whether I was grinding my teeth at night and arguing over if I was doing too much which was stressing me out. However, every time when we thought we had found the trigger, another migraine would hit me and we would be back to square one. This was infuriating, particularly during my GCSE years. It wasn’t uncommon for me at this time to be in bed three times a week, vomiting for up to 8 hours at a time and in immense pain. Even when I wasn’t in bed, I would have a migraine hangover and would struggle with not being able to make it through a school day. I took this hard, as I loved studying and having something prevent me from doing what I loved sucked. The pain and boredom of being stuck in bed infuriated me. It also stopped me from doing things other people my age could do; I couldn’t have sleepovers (as this would mess up my sleeping pattern) or go out for drinks with my mates (due to the caffeine, alcohol or aspartame in drinks) or even just binge eat an entire chocolate bar (due to the amount of caffeine and the possibility of it giving me sugar spikes).
There was also a constant anxiety of when a migraine was going to hit me next. This is something I still struggle with now, even though my condition is nowhere near as bad as it was. Signing up to things you want to do but wondering if you will be in a fit state to do them is a horrible position to be in. At points, there are times when the condition robs you of the things you enjoy most, such as performing at concerts or going to rehearsals. Luckily, I managed to make most of these, but there have been times when I’ve had to skip them as I was unable to get out of bed due to the debilitating nature of the condition.
My condition has not only impacted on me but also those around me. Even after my family were told that I didn’t have meningitis, the stress continued. My mother would often have to watch me in large amounts of pain. I would ask her to to try and take it away. She was helpless as, at the time, no amount of medication would help me. She also had to spend a great deal of time looking after me as, when I was sick, I couldn’t do most things for myself as I was stuck to my bed. My friends at school would also often worry about me around the time I would get a migraine as I would act “oddly”. They would watch as one moment I was fine, but 30 minutes later I would be demonstrating the same symptoms as a stroke. This would be terrifying for them, particularly if I had given them no pre-warning about my condition.
Most of my friends, family and teachers have been amazingly supportive of me and my condition. They have been patient, understanding as well as supportive and I don’t know how I would have been able to handle my condition without them. However, not everyone is like this. Some people still believe that migraines are “just headaches” so when I try to explain to them my condition they see me as weak and overemotional. For most occasions, it is just a case of talking about my condition with those who have never encountered it before. However, other times this has put me into uncomfortable situations. For instance, once I told my teacher that I couldn’t do my homework due to a migraine attack. While he didn’t question it, his face was not impressed and made me feel that I hadn’t tried hard enough to do the homework. Another time, I rang into work (while suffering from the confusion of a migraine) to tell them I had a migraine and the manager proceeded to explain to me how I was letting the whole team down as if I was merely being lazy. At points, it even comes from others who suffer from migraines but with different symptoms to you. One time, a colleague at work gave me a lecture about how it is all about pinpointing the triggers and you just need to find them and avoid them (this is not true, some people can’t find a trigger or their trigger isn’t avoidable). When this happens, it makes me feel that my condition is not valid, it is my fault and that I should be trying harder to manage my condition.
Though, it should be noted some people do go the other way. One time, I went to the medical room to ask the new nurse if I could walk home as I had a migraine (which I had been allowed to do many times before). She told me no as my brain could be haemorrhaging and my dad needed to take me to the hospital despite my insistence that I had a condition and my brain certainly was not haemorrhaging. She then proceeded to put me in a well-lit room with a lot of people in (photosensitivity and sensitivity to sound are symptoms of migraines) clearly having no concept of migraines as a condition and ignoring my dad’s request to put me in a dark, quiet room.
Sometimes, those with migraines don’t just struggle with ignorance of the condition but instead that society isn’t accommodating to the needs of those with migraines. For instance, there have been multiple times in the past where I have asked restaurants or bars for drinks which don’t have caffeine or alcohol in. If this was a nut allergy, it would either be indicated on the menu or could be established in less than two minutes. However, when it comes to caffeine, it normally takes about 10 minutes and a lot of effort on behalf of the staff to work out if a certain drink has caffeine in it or not. Sometimes, there are no drinks without caffeine or alcohol, which sucks, because then you have to be the boring friend who is drinking water at a bar. While this isn’t as hurtful as some of the other situations I’ve found myself in, it is a reminder of the fact I am different and that my conditions is inconvenient to those around me. This could be easily avoided by highlighting on menus what has caffeine in and how much of it there is.
I am so fortunate to have discovered a medication that has almost got rid of my migraines altogether and when I do have migraines, they are fairly painless and only last a couple of hours with minor symptoms. However, some people aren’t so lucky. There are people out there today who have their life put on hold due to the severity of the condition (it is the 7th most debilitating condition to have, with severe attacks being as debilitating as active psychosis and dementia) and have to deal with the ignorance about the condition constantly. They can’t work, have an education or enjoy a social life as they are confined to their bed and society makes them feel isolated and alone. That is why talking about the condition is so important; so society can be more tolerant and those with the condition can feel more accepted, easing part of the difficulty they face even if they still have to deal with the debilitating condition. Raising awareness can also lead to greater funding and donations (migraines are the least funded for research among the neurological disorders) which can lead to a cure faster.