Imagine waking up with a feeling of pressure on your head, you’re ready to puke, the sunlight shining through your window burns like hell in your eyes and the slightest sound makes you cringe. You try to stand up and a pulsating sensation passes like a wave of pain from your neck to your forehead. It could be a migraine.
Although many people sometimes experience a headache or severe hangover, it is migraine of a different caliber. Especially if you suffer from it twice a week. Then we can speak of a chronic condition. The moments when you experience pain are called attacks. In a video by the University of Flandersexplains what exactly migraine is.
Lucia Brassart is 27, and has been living with her chronic migraine for about 9 years. She works as a care provider in a department for people who are deaf and have a psychological vulnerability. She can’t remember the first time she had a seizure, but she saw strange things before the pain came. That’s called an aura. “I remember sometimes seeing things like stars and colors, and then it grew into a c-shaped thing. And then it went back to the left. My friends thought it was from looking at too bright lights.” She also remembers that bright light suddenly started to hurt her. She eventually went to the doctor, who told her she probably had a migraine. And that was that. “It wasn’t until two years later that I went to the neurologist,” she says, “I was really fed up, it wasn’t normal anymore.”
It’s absurd, because according to WHO, chronic migraine is one of the most crippling/disabling diseases in the world. According to this study published in The Lancet, more than a billion people in the world suffer from migraine. It is the “largest cause of disability in people under the age of 50 (particularly in women),” the study reads. According to experts Prof. Dr. Jan Versijpt (UZ Brussel, via email) has “about 1 to 2 percent of the population chronic migraine, it may be genetic and seems to mainly affect people between the ages of 20 and 50.” But if so many people suffer from this disease, why haven’t we found a solution for it yet? Quite a few people get a prescription for painkillers, such as Paracetamol or Excedrin – a painkiller with caffeine specially designed for migraines.
“I take triptanen,” Lucia says. That is medication aimed at stopping a migraine attack, especially for people who take painkillers or NSAID’s (non-steroidal anti-inflammatory drugs, anti-inflammatories) are not working. Although they can stop an attack, “don’t take too many of them because you can get a rebound headache.” This happens when you take so many painkillers or medication that they can just cause an attack. “I can’t live without it anymore,” she says. Because if she has a seizure during her job, she can’t just stop. Still, it’s not a solution. You can also just get sick from the triptans. “I take that and then I have to lie down somewhere for an hour or two because it makes me so bad, it feels like a bus has run over me. I am really paralyzed by it.”
Someone who is diagnosed with chronic migraine “has headaches about 15 days a month, of which 8 with migraine characteristics,” says Versijpt. Lucia usually has an attack twice a week. “That takes about a whole day, sometimes two or three, but sometimes just a few hours.” And while some people know their triggers – things that can bring on an attack – Lucia has no idea what triggers her migraines: “It comes when I want it, when I wake up or when I want to go to sleep, or when I have a pint of up. I do know when I work all day and then have a drink or go to a concert that I am more sensitive. But I have days where I’m completely fine and then still get migraines. That is super frustrating.”
“You experience a kind of distance from your body, as if you are not best friends with it.”
That unpredictability in itself is a factor that can weigh heavily on your life. “You experience a kind of distance from your body, as if you are not best friends with it. And that is difficult, because on the one hand you have to take care of your body and love to see it. But it often takes the upper hand and ultimately chooses what your day will look like,” Lucia testifies.
Lucia calls the disease invisible. When I ask her why, she tells me it’s because you are almost always alone in your suffering. “You usually go into isolation, you just sit at home in your bed, in the dark.” People don’t see you when you’re in pain because there’s not much you can do but try to sleep, hide in a dark room, and hope that eventually you’ll fall asleep and magically stop being nauseous, that your head will stop throbbing .
“I sometimes get the feeling that people think I’m faking it, that it’s in my head.”
In addition to the hours you spend in your bedroom or couch, in the dark, chronic migraines also have a serious impact on your mental health. Your social life is under pressure from your illness. “Besides the pain, I find missing social events the hardest. I have friends who like to sit in a bar or go to a gig, and I would like to come along, but it happens so often that I sit there with a fit. And then I don’t want to show it. When I’m at home I have the heaviest fomo because it just hurts too much to go outside. Not being able to see your friends is hard.”
But that also keeps people from seeing her suffer and so they don’t always believe her. “I sometimes get the feeling that people think I’m faking it, that it’s in my head. They tell me ‘yes, you are always sick’. But I don’t choose to have to cancel appointments, or to have to puke all the time.”
She won’t admit it easily either, “that’s the hard part about me, I just want to be normal, that people don’t know that it bothers me so much, certainly not at work. I don’t want people to think they can’t count on me. I am really doing my best to go to work and take on my responsibilities.” And although you are certainly not “weak”, the environment seems to think so, or you are just thinking about it yourself. According to Versijpt, chronic migraine is also often accompanied by depression. According to the American Migraine Foundation about 30 to 50% of chronic migraineurs have a risk of depression. Lucia has also admitted that it is an enormous emotional challenge: “I just couldn’t be a normal person, not function normally. Sometimes I send to friends, or my friend, ‘I don’t want to live like this anymore, go on like this’ because I try so hard not to have it and then it’s there anyway. That is so frustrating.”
Although she finds it difficult, Lucia also agrees when I ask her if she sees her migraines as a limitation. “I work with people who have a physical disability, so maybe that’s a strange thing to say. But yes, as long as you are limited in certain areas by something you can do nothing about, then I see that as a limitation. I want to do what every twenty-something does, but my body doesn’t always want to go along.” But she also pushes herself to make the most of her days. “Just push to keep going. I do take medication, and then I will be high in the sky for a while, but it will work. Otherwise I’ll be at home and barely have a life left. Although sometimes that is the only option.”
Lucia started taking normal painkillers at the age of twenty: “I only took Excedrin and paracetamol, a lot of paracetamol. According to my diary, three every day for a long period.” Now she takes triptans, but their effect deteriorates after a while. Just like with antibiotics, your body builds up a kind of resistance to the effects of those pills. So she was prescribed injections. “I can put a syringe in my thigh and the attack would subside after ten minutes. But I am afraid of it, so I save that for a really heavy attack.” She has also been prescribed antidepressants, which apparently also work for migraines. “I would rather just not use those things, and live with turmeric or ginger. Unfortunately, that is not the case.” There is as yet no panacea that will stop the attacks. The best you can get is medication that reduces the frequency.
So young and already having to take so much medication, being a frequent visitor to the doctor or specialist. That takes its toll. I asked her how she feels about doctors: “I’m not sure. I sometimes feel that they don’t fully understand me. My migraines are always exactly linked to my periods and hormonal cycle. I often just come out with more questions than answers.” And besides the fact that her first doctor just gave her painkillers and didn’t even refer her to a specialist, she also just got the answer from another doctor in the emergency room that “it must be related to the stress of your work,” without further ado. research. “It’s a migraine and now you have to learn to live with it, that’s exactly what it comes down to.”
With an extra year of studying, due to her illness but also other circumstances, she was still able to get her diploma. In her work as a caregiver, Lucia sometimes ends up in emergency situations where she can’t leave if she doesn’t feel well herself. “I can hardly say that I am going to recover in the toilet for 10 minutes. Or if I’m absent due to a migraine attack the day after a crisis, they might say I’m not suitable for the job after all. They would understand, but my colleagues must also be able to count on me. Especially in the healthcare landscape where we have a shortage of personnel.”
“I remembered that a guy came up to me and asked me to play in a café in the Overpoort, but that man’s breath smelled so heavily of beer that it triggered an attack.”
In addition to her work, Lucia also tries to take a step as a DJ. She doesn’t do it often and for a long time yet (once every 1 or 2 months), but she has already been on nice commercials. “Usually I play in cafes or exhibition openings, I haven’t got very far yet.” But what is life without adversity? Here too her condition throws a spanner in the works. She told me about how she once got sick during a set: “I was playing at the Vlasmarkt in Ghent, the atmosphere was good and people were dancing on the bar. I remembered that a guy came up to me and asked me to play in a café in the Overpoort, but that man’s breath smelled so heavily of beer that it triggered an attack.” And that is absurd, she says, “because the whole café smells like beer. It just didn’t work anymore, I wanted to continue but my body didn’t want to.” Fortunately, it has only happened to her once so far.
Although she doesn’t want to identify with her illness, she still wants to use her illness and her passion for photography to expose her condition to the world. She does that on her Instagram page. “I prefer to shoot raw, even a bit voyeuristic.” She captures moments you wouldn’t normally photograph: a friend reading a story to his puke, a group of friends who all kiss each other. When her love saw her lying in bed having a seizure, he felt that he too could capture something that normally cannot be seen. “That way you can see what happens in my isolation, what is behind the scenes.” She does this mainly to make her condition more visible to the outside world. “I just want it to be talked about more because so many people have this. I think it’s good that people find help with a diagnosis because diseases get more attention on social media.”
“I hope I don’t come across as someone who seeks attention by sharing my illness. I sometimes worry that I have imposter syndrome, that people think I’m just pretending. But I actually know very well that I don’t want to be that person who is always sick. I can’t help it, but I have to live with it.”
Follow Lucia on Instagram.
