Category: Reader Stories

What’s your story? Send an email with your name, age, headache disorder, and a little bit about yourself to kerrie [at] thedailyheadache [dot] com. I’ll follow up with some questions for you to answer.

Catie is a 20-year-old college student who has had chronic migraine her entire life. She remembers her first attack at age three, but was not diagnosed until she was five. In writing how migraine shapes her life, she said, “Because I have been dealing with this for my entire life I have no idea what normality feels like, but I also have no idea what kind of person I would be today without it. Having to push through the pain has made me a diligent student and a more empathetic human being, and it has also taught me the value of self-care. Additionally, migraine has given me direction as a student of public health, and in the next few years I hope to do research on the relationship between chronic disease and mental health.” It was a pleasure getting to know this vibrant young woman.

Do you feel like you’ve missed out on school experiences because of chronic migraine?

I don’t necessarily feel like I’ve missed out on anything, but there are definitely certain college experiences that I can’t have as a migraineur. For example, I know that if I want to take care of myself I can’t drink a ton of coffee and pull an all-nighter or go out drinking and partying, because these situations all involve triggers for me. And while I don’t exactly long to partake in these activities, I often feel that I have a difficult time relating to my friends whose lives seem to revolve around them.

How do you manage school with chronic migraine? Do you have any tricks for making it easier? Do you manage differently in college than you did in high school?

I’ve found that managing college with chronic migraine is surprisingly doable so long as I keep in mind that life has not afforded me the luxury of procrastination. Because I have no way of knowing when a particularly bad attack will come on, I always make sure my work is done a few days in advance of the due date. Doing this helps prevent migraine from affecting my grades and holds me to the same standards as everyone else, which is important to me.

In my opinion, college is a much easier environment to navigate as a migraineur than high school. One reason for this is that college assignments are always given far in advance of the deadline. In high school, one bad attack could be enough to affect my grades since homework was due just a day or two after it was assigned. Additionally, college gives me the autonomy to decide if I’m feeling well enough to go to class or if I need to leave to take my medication. In high school, I didn’t get to make these decisions for myself, and that often resulted in delayed medication and worse attacks. Finally, in college all the course material—including PowerPoints and often lecture recordings—is posted online, so I am at less of a disadvantage if I do need to miss class.

What coping strategies do you use to deal with chronic migraine?

The most effective coping strategy for me is to think of all the positive ways migraine has impacted my life. Sure, migraine has caused me incredible amounts of pain over the years. But it has also profoundly influenced who I am. Migraine has helped shape me into a diligent student and a resilient, empathetic human being. I don’t know who I would be without migraine. So every time I have an attack, I have to tell myself that I’ll come out of it a little stronger. I hope that one day I won’t have to live with migraine. But I also have to accept the likelihood that it will always be a part of my life, and I have to be okay with that.

What symptoms bother you the most?

The pain is by far the worst part. It honestly feels like a thunderstorm in my head. I know how little sense that makes to most people, but I don’t know how else to describe it. I can feel the throbbing just by placing a finger on my temples, and the pain gradually centers above my right eye and becomes increasingly intense. It really feels as if the pain has no limit, and it’s very frightening.

What do you wish people knew about migraine?

I wish more people understood that migraine is a chronic disease that can affect a life as profoundly as diabetes or epilepsy. I think people tend to see migraine as a singular event, and that just doesn’t match up with my experience. So much of my life is centered on trying to avoid the pain. So when people who have had a few bad headaches claim that they “know exactly what I’m going through,” that feels really unfair to me.

What else would you like to share?

I would just like to share this photo of myself and my boyfriend, Nick. Nick has been phenomenal in helping me cope with migraine over the past couple years. He is known for spending entire Friday nights lying next to me in a dark room and for reminding me that my migraine attacks are not my fault—not even the ones that follow a moment of weakness involving a Starbucks latte (my biggest and most tempting trigger). I’m so grateful to have that kind of support.

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.

In this beautiful essay, John Ptacek describes how he’s learned to live with the pain of chronic migraine without suffering. Want to share YOUR story? Submit it here.

Walking the Line Between Pain and Suffering

We learn to avoid pain at an early age. We are taught that hot irons, sharp objects and electrical outlets portend danger. Parents counsel children about such dangers, but sometimes the most effective teacher is pain itself. Pointed lectures are no match for a bright purple bruise. Incident by painful incident, we learn to sidestep misfortune through increasingly observant behavior.

We learn to avoid pain, but who teaches us to live with it? I, along with a billion and a half other people in the world dealing with chronic pain, could have benefited from a lesson or two on this subject.

We can all avoid trips to the emergency room by treading carefully on icy sidewalks and tucking in our fingertips when speed chopping carrots, but preventive strategies are of little use to people experiencing ongoing physical pain. People dealing with fibromyalgia, Lyme disease, migraine and a long list of other chronic conditions understand that their pain cannot be outwitted. They are chained to it, and probably forever.

The urge to resist pain is instinctive. What could be more natural than to hate hurt? One of my earliest memories of pain was the electric jolt of a bumblebee sting. I wailed hysterically as my mother patted a wet baking soda mixture around my throbbing thumb. I wondered how something so horrible could happen to me. All I did was touch a flower! This isn’t fair, I decided, unknowingly adding a layer of emotional distress to the mix. Soon, the pain went away, and along with it my existential uncertainty.

This rapid recovery cycle would repeat itself in coming years as I endured broken bones, concussions, pinched nerves, kidney stones, shingles and other assorted agonies. A “why me?” inner narrative often accompanied these events, but the pain passed too quickly for me to perceive that such mental resistance came with a price. That is, until the headaches showed up at my door.

Sometime in my fourth decade I started getting frequent headaches. At first I shrugged them off to my highly stressful job. Rather than seek medical attention, I started meditating, exercising and eating healthier. None of this put the slightest dent in my pain. In subsequent years, I sought the help of every traditional and alternative health care provider who might have even a remote chance of helping me. They gave it their best shot, but nothing helped. My headaches continued unabated. The lack of progress shuttled me off to a cold dark place familiar to chronic pain sufferers, a solitary space that is all but impossible to describe to outsiders for whom pain is a just passing affair.

Frustration at having to drag my evil friend around with me nearly every day compounded my painful existence. My mind had gotten in on the act, and now I had two fires to put out. Here’s the kind of nonstop chatter I had to endure: How much more of this can I take? If it gets any worse, how will I be able to work? Am I always going to be in pain? What’s the point in living? Why can’t these damn doctors do their jobs?

Anyone experiencing chronic pain knows what it’s like to be tuned in to this unnerving frequency. My unanswerable questions pitched me further and further into an unknowable future.

Even if someone would have counseled me early in life that embracing pain, rather than resisting it, was a winning strategy, I probably wouldn’t have known what to do with it. Wisdom can be baffling at first, and brilliant only later. And anyway wisdom can’t be taught. Moments of great anguish served as my bright purple bruises, and one day, I can’t say exactly when, I got wise to the voices in my head that were the cause my suffering. I achieved a degree of separation from them. I could still hear them, but it sounded like they were coming from the next room. Without really looking for it, I discovered that there was a dividing line between pain and suffering, and depending on how I walked that line, my situation could be either bad or much worse. Who knew bad could sound so good?

This dividing line can look awfully blurry when pain pins me to the mat. Because I am not at my rational best during such moments, I keep a note in my sock drawer reminding me not to push myself and to refrain from making important decisions. I also have a secret password to pull me up when I feel myself slipping into the pit of suffering: Allow. I allow the pain, and immediately suffering leaves the room. Without resistance, suffering cannot exist. That leaves just two of us in the room, me and my constant companion, locked in an uncomfortable but tolerable embrace.

Let me be clear. Pain is a rude and abusive house guest. No secret password will put it out on the street. I will be forever forced to cover its rent. But knowing this relieves me of my duty to resist it, and in that simple act of surrender, I know that I am opening myself up to all the goodness that life will allow.

Read more of John’s writing on his blog, On Second Thought, where he explores “the unquestioned assumptions that limit our capacity for happiness.” His writing is thoughtful and insightful.

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.