Growing Up with Migraine: Trying to Fit In and Appear Normal

When you’re young, the thing you want most, the thing you strive for most, is to fit in. In our childhoods, we dress the way we’re told is cool, we act the way we see our peers act, we carry ourselves the way we deem to be the status quo. As we journey into adolescence and beyond, this pressure to appear normal becomes stronger. The task of fitting in persists and becomes palpable in school and in social settings. We want to be a member of the pack, unnoticed for differences and unset apart, but many things get in the way of this drive. Chronic migraine got in my way.

Having to Miss Out Made Me Different

My migraine attacks started when I was just 12 years old. By the time of my first homecoming dance a few years later, I was used to the attacks and knew what to expect and do. That night, my outfit was planned, my friends were waiting, and my night held fun in its future. Then an attack hit me out of the blue. I couldn’t move or think, let alone try to dance. I found myself  crying not only from the pain, but also from the disappointment of missing my first high school dance. I stayed home that night, laying in my parents’ bed with the lights low and a cold pack fastened to my head while my peers socialized and had fun. I wasn’t there. I was physically left behind. And suddenly I had the undeniable understanding that I was in fact different from my peers.

This sentiment of being different remained as I progressed through my adolescence, and soon, my peers noticed it too.

Questions Led to Worry

Common questions from my peers included:

• “Did you skip class again today?”
• “Why are you always in the nurse’s office?”
• “Why do you take so much medicine?”
• “Maybe you just have a low pain tolerance. I get headaches all the time, and I never miss school.”
• “You don’t look sick. You don’t look like someone with a chronic illness”.

These questions and comments didn’t anger me, really, but they did make me wonder:

• Why is this happening to me?
• Should I just try to buck up?
• Am I making this up?
• Am I just being dramatic?

It wasn’t long before my questions shifted to worry:

• Will I be able to go to a concert tonight?
• Will I get a migraine attack during a test?
• Do I have enough medicine to get through the week?

Luckily My Dad Was a Headache Specialist

There was one important factor for me, though, that made a difference. Something that I realized all the more so this year when I met other young adults with migraine. I had my father who was a migraine specialist for decades before my own attacks started. Because of this, he could spot the symptoms of chronic migraine from a mile away. He could answer my questions and help me find a pediatric  neurologist. He could support me, he could understand my pain. At the very inception of my illness, I was never questioned by my family. My pain was taken seriously, my symptoms were tracked and treated, my family was a comforting and amazing support system.  They listened to me and never diminished or devalued the difficulties I faced.

I am so eternally grateful for my father and the knowledge and care he provided and continues to provide for me during my migraine journey. Many people with migraine, especially adolescents, do not have these luxuries. Many adolescents are called dramatic, their pain isn’t taken seriously by their families, doctors, and peers. Many times, it takes years for them to get a diagnosis and treatment. That is why it is so crucial to spread awareness about adolescent migraine.

Time to Make Some Lifestyle Changes

Once I became accustomed to my migraine attacks, I started to understand that I had to change my life. If I wasn’t fully aware of how different I was from my peers before now, at this point I certainly was. The necessary changes to my life are what angered me about my condition. I could no longer wear perfume- it hurt my head too much. Never again could I step foot into a Yankee candle store at the mall. Harsh lighting could spark an attack with no warning. More than two drinks of alcohol would steer me to unimaginable pain. Loud noises could trigger discomfort. I was to get enough sleep, never too much.

My migraine attacks  in many ways began to control me, and so I crafted my life around them. I missed so many opportunities because of the pain inside my skull. So many fun days and memories with friends were left un-had and unmade. This is where my anger emerged; this is where my differences were unable to be ignored.

Over time, I began to understand my condition and triggers. Never vodka, sometimes gin. Floral scents are dangerous, but citrus is manageable. Drink caffeine often, steer away from sugar. Keep a small pharmacy in one’s purse at all times— just in case. I began to master the balancing act of a chronic condition. But through it all, my sense of alienation remained, and it does to this day.

What’s Next?

I still wonder where my migraine disease will take me, and what parts of my life will be affected. Will I have a migraine walking down the aisle at my wedding? During the labor of my first child? Will one pop up during the moments I want to remember forever, painting them in my memory as painful rather than full of joy? I’m unsure. I can only move forward and try to get my migraine attacks under control- a lifelong journey for most of us suffering.

There is one thing I can do, however. I can advocate. I can speak out about adolescent migraine in the hopes studies continue, trials progress, and medication becomes more readily available. I also hope that my story helps to make other adolescents with migraine feel less alone, less disconnected from their peers, more confident to advocate for themselves at home and with doctors, and hopeful that things do get better, and migraine is something that one can come to understand and live a full life with.

Feeling alone? Here are tips on how to stay connected while managing migraine.

Looking for a certified headache specialist? Use our free locator to find a physician near you.

Let us know…

Does your family/loved ones understand your migraine? Do you have their support?