One of my earliest memories is from kindergarten, when I was four years old. After lunch, we used to lay down for a nap in our classroom and sleep for a few hours. I remember my head hurting so much that I could not fall asleep, every single time.
The headaches continued for the rest of kindergarten and followed me into elementary school. My teachers understood that I was hurting, so they often let me lay down in their office, and brought me food and drinks to hopefully give me some relief. At the time, no one was sure why I was in pain. I was really young, and most people assumed I was just exaggerating, like kids do. However, after years of calling home every day from school, my parents finally decided to bring me to a hospital, to try and understand the reason behind my headaches. The doctors checked me for most issues: I went to a dentist, to an allergist, to a psychologist, to an optician. Eventually they concluded that I was short-sighted and gave me glasses. That should stop the headaches, they said.
But they didn’t stop. My childhood was spent in between school and doctor’s appointments. No one could figure out why the headaches kept coming. Finally, after dozens of different clinics and treatments, I was diagnosed with chronic migraines.
Chronic migraine is, by definition, having migraines for 15 days (or more) per month, for at least three consecutive months. Symptoms include headaches, light, smell and/or sound sensitivity, nausea and vomiting, dizziness and aura (visual disturbances – which I thankfully do not have). It is a debilitating and disabling condition, which impacts every aspect of your life. Finding appropriate treatment is extremely challenging and most people never do.
Getting the diagnosis – albeit quite disheartening – was still good news for me. At the time I took at least one painkiller a day, and they had already stopped being effective long before. I hoped that understanding what the cause was would help me find a better medication, which would help me get better. Over the years, I have tried everything. From acupuncture twice a week, to Botox injections, to antidepressants and so many drugs I can’t even recall them all. Sometimes a treatment would work for a few weeks, and I would get excited, hopeful for my attacks to stop. But they never did, and every single medicament was eventually scrapped.
In a way, I have learned to live with it now. I know what usually triggers my attacks – anxiety, too much or too little sleep, certain foods or drinks, dehydration, too much light, certain smells – so I try my best to avoid it. I have been going to a therapist for years to work on my anxiety, I go to sleep and wake up at the same time every day, I avoid food, drinks or smells that can trigger me, I try to drink more water. It is a constant thought. Whatever I do, my migraines are the first thing on my mind. All of this does not stop the pain, however. I am in pain every single day. Sometimes, it’s not that bad, I can go on with my day and do most things without feeling too sick. Other times, I feel like I’m going to die. When I get a strong attack, I am literally disabled. I can’t eat, I can’t drink, I can’t stand up, yet laying down also makes me sick. I can’t watch TV or YouTube because it hurts so bad, so I’m stuck in the dark, in silence, with nothing to do except think about how bad I’m feeling. When I was younger these types of attacks would last several days. Thankfully, after I was diagnosed with migraines, I started taking more appropriate medicine which can usually stop them within the same day.
And yet, the worst thing about having a chronic illness is not the pain but the complete disregard of my sickness, by family, friends, professors and even doctors. When I tell people I have chronic migraines, the first thing they say is “Oh yeah, I get headaches too”. I can’t count the number of times I have been told that “everyone gets headaches, it’s not that big of a deal!” When I first start a new course, the first thing I do is talk to my professor about how I’m going to miss most seminars because I’ll be too sick to go to class. They will usually say they understand and that it’s fine, yet as soon as I miss two classes in a row, I’ll receive an email complaining about my absence. It happened in high school, and it happens in university as well.
Last month I had an issue with my medication – pharmacies here in The Netherlands seem to hate me – and I got stuck at home, sick out of my mind and without any medicine. A situation like this is my worst nightmare, so of course I panicked and made myself even more sick because of stress. I didn’t know what to do, so, after crying on the phone with my mom for an hour, I went to the hospital. I was hoping they would give me a painkiller but that didn’t happen. I was made fun of and ignored as I sobbed in front of the doctors and was told it was “just a headache and should take an Ibuprofen”. Only after I begged them to give me something stronger, I was given a prescription for my actual medicine. Suffice it to say, I had multiple panic attacks and will always remember that day as one of the worst in my entire life.
All of this to show that chronic pain is not taken seriously. Very often it is not a visible disability and therefore not considered important or even real by most. About one billion people in the world suffer from migraines, it is one of the most disabling conditions in the world and the World Health Organisation has confirmed that severe migraine attacks are as disabling as quadriplegia. Yet we rarely hear anyone speaking about it, because of how stigmatised invisible illnesses are.
Migraines are also extremely expensive. I spend so much money each year on doctor’s appointments, medication and various treatments. I’m privileged enough to be able to afford these things and yet, there are so many treatments which could work and yet I’ll never be able to try because of how expensive they are.
My migraines will most likely never go away. I will always have to live with it and try to find better ways to deal with my pain. Still, the time and opportunities I lost because of my chronic illness will never come back to me. On the contrary, I will keep losing these things and more for the rest of my life. It is a scary thought, knowing you will be in pain forever. Sometimes I get angry thinking about it, most times I’m just sad. I wish I could go out without worrying if I have my medication with me, I wish I could drink and eat without having to think about triggering an attack, I wish I could relax for once in my life. But I can’t and, although it’s not fine, it’s just how it is. I can only keep dreaming of the day migraines and chronic illnesses are taken more seriously as I keep living this life, one day at a time.
Written by Elisa Paci
Oh wow. Sounds like a terrible thing to go through indeed. I’m inspired by how Elisa has chosen to accept it instead of merely hoping for it to go away, but at the same time, I do also wish that she would someday be free from this. Thanks for sharing!