How Migraines Drove Me Out Of The Office, And Into My Dream Job

Self-employment was the perfect solution for my problem with chronic headaches, but it shouldn't have been my only option.

When my alarm goes off at 7:32 a.m., I slap at it while trying to dodge a blinding ray of morning sunshine.

That should get me going. Instead, I groan and try to turn away.

The light sears my sensitive eyes, and the ache in the back of my neck doesn’t so much abate as twist when I rotate my head. The inside of my skull feels raw and fuzzy like an inverted tennis ball.

My husband hears my muffled moaning in the next room and comes in to check on me. “Is it your head?” he asks, already knowing the answer and leaning down in case I’d like his help sitting up.

I do. As I sit upright for the first time, I get that initial diagnostic blood rush that helps me gauge how soon I need coffee, or ibuprofen, or something stronger to make it through the morning.

Migraines can make even the healthiest body feel aged and weak.

This particular day, the pounding subsides after about two minutes. That means it’s a good day. At this rate, I’ll be at my desk working within 30 minutes.

With my right hand on my temple to ease the throbbing, I shuffle to the bathroom and shake two pain relievers into my mouth. The tap water seems extra cold this morning as I wash down the tablets, then splash my face. I wonder if other people–people without chronic migraines–feel the same intense relief of icy water on their skin, the way it feels like it penetrates the surface, tingling with healing powers.

I head into the kitchen and hit the button on the electric teakettle to get water boiling for coffee. From there, my hand goes automatically to the refrigerator. There’s a cooling eye gel roller in the door. I smear it around my eyes and on my temples, which probably makes me look even more manic than I feel.

But mostly, I don’t feel manic. I feel tired.

Migraines can make even the healthiest body feel aged and weak.

A National Epidemic, Especially Among Women

Describing a mostly undetectable illness can also wear a person out. According to the Migraine Research Foundation, more than 38 million Americans suffer from migraine headaches. Of those, a whopping 28 million are women. It’s a fairly common condition, but talking about pain, especially invisible pain, is intrinsically linked with gender norms, no matter how enlightened you think you are. For years, I apologized for inconveniencing my friends. Even now, I’m overly grateful that my kind husband is such a supportive caretaker, simply because I’m so used to explaining away my own suffering.

I’m not alone in battling the stigma, as migraines have unusual cultural baggage. Back in 2011, then-presidential hopeful Michele Bachmann was roundly dismissed as a strong contender due to the sexist assumption she wouldn’t be able to hold higher office while suffering from debilitating headaches. Say what you will about her political positions, but women migraine sufferers are often used to defending their pain in an uncomfortably similar manner.

Talking about pain, especially invisible pain, is intrinsically linked with gender norms…

This isn’t about gendered weakness; it’s scientifically proven that women experience more pain than men.  Studies suggest that because men’s and women’s brains are different, women are more sensitive to pain, which certainly could explain why women are also the majority sufferers of conditions such as fibromyalgia and osteoarthritis, as well as migraine sufferers in far greater numbers. Women have also been shown to be more resilient when it comes to tolerating pain, though I have to wonder which came first: all this gendered pain or our ability as women to deal with it.

After nearly three decades of managing the symptoms, I can tell when a migraine is going to be easy to quash, and when I need to pop a triptan. Depending on the day and severity of my symptoms, some people might not even label my pain as a migraine; today, for example, it’s likely a run-of-the-mill headache.

But, given that I’ve had debilitating headaches since I was around 8 years old and been trying to explain them since, I don’t tend to parse the difference anymore. If I can get up and get to work, I’m grateful. That doesn’t mean I’m entirely well, or that my pain doesn’t deserve its severity label.

How Migraines Gave Me My Dream Job

For the past decade, I’ve been an independent journalist, which means I work for half a dozen publications at any given time, covering stories and topics across a range of issues. I relish the education and diversity of subject I get to cover… but I especially love that I get to set my own schedule.

That’s because, as a lifelong migraine sufferer, traditional 9-to-5 employment isn’t exactly designed for people like me, who can experience extreme torment at the drop of a hat. When I experience an attack, I have to quickly deal with any number of symptoms, ranging from projectile vomiting to extreme sensitivity to sound and light.

As a lifelong migraine sufferer, traditional 9-to-5 employment isn’t exactly designed for people like me…

Being a freelancer is a lot like being a perpetual student. There are constant deadlines and little resembling a traditional  workday schedule. (Going out with fellow freelancers during the week is like the study group part of adulthood.) I love the unpredictability and often late hours, and I’m extremely fortunate to be so well suited to my profession. Some of the sting of freelancing is also taken out of my situation thanks to the fact that my partner’s job provides me with reliable health insurance.

I’ve always been entrepreneurial by nature. During graduate school, I had several jobs—in upscale restaurants and university offices—that helped cement my desire to figure out how to be as professionally self-sufficient as possible. In each of them, my migraines helped quickly drive me from the job.

In one administrative position, the office’s overhead fluorescent light panels often made me ill, or at least threatened to do me in. I’d be fine for weeks at a time, and then, due to some unknown trigger, the lights would do me in, and the migraine symptoms would suddenly show up. I’d have to ask to go home sick in the middle of the afternoon, helplessly trying to explain that, like Cinderella at 11:15pm, I was just 45 minutes away from a complete breakdown. “You see, I can already tell that if I don’t get to bed now, I’ll be blindly throwing up in the ladies room in less than an hour.” Talk about oversharing… but how can you discuss a sickness you can’t see if you don’t overshare?

But there are worse things than managers that don’t understand. After going home with a migraine at a high-end waitressing job, my paternalistic boss decided I didn’t need to come in the next morning.

How can you discuss a sickness you can’t see if you don’t overshare?

“You should rest,” he insisted, and took me off the schedule even though I was well enough to go in, and needed the money.

“I’ve had migraines. I know how they are,” he said as if I didn’t know the same.

It wasn’t long after that I swore I’d find ways to not be reliant on people like him, who both seemingly cared but ultimately robbed me of the one thing a job is supposed to be about: making a living.


Photo: Gustavo Devito


But Self-Employment Shouldn’t Be The Only Solution

Illness and disease are often talked about in terms of cost, and I don’t just mean health insurance or prescription medication.

Recently, after spraining my foot while out reporting in the mountains, I began thinking about the personal and social costs one incurs from some sort of symptom set or constraint. I can still walk, but in a controlled ankle motion (CAM) boot, I’m forced to be steadier and slower. If I want to get around quicker, I could spend money on a taxi. Even I want to take public transit, a cheaper option, I’ll still likely force some small percentage of commuters to wait on me. My personal injury or illness may mean the bus doesn’t run on time for a large group of people.

When my migraines were more frequent and intense, it had measureable costs. There is immense privilege in being able to be self-employed, and to have access to the drugs I need. There were times when my preferred prescription, still under patent and unavailable as a generic, cost $45 a tablet without insurance. Weighing whether and when to treat symptoms is something far too many people consider every day. If my husband were ever without full-time work and health benefits, I’d have to reconsider the independent nature of my career.

As with other gendered aspects of illness, I do wonder: when getting sick at work got to be too much of a hassle, why did I solve the equation by removing myself as the variable component? I probably could have explained myself more thoroughly or found workplaces more accommodating to my condition, or to diversity and differences more generally.

For me, being self-employed is a natural fit. I’d always wanted to work from home, and I’m fortunate that enough factors in my life made that a relatively painless transition.

People with certain limitations who may already feel shut out of society shouldn’t be expected to self-select out of careers and corporations where their needs won’t be met…

But I’m not convinced that freelancing and self-employment offer the easiest career path for the majority of workers, even though traditional workplace culture has been slow to evolve to accommodate a range of limitations, visible or not. People with certain limitations who may already feel shut out of society shouldn’t be expected to self-select out of careers and corporations where their needs won’t be met, which is sort of what I did without fully questioning why.

People with health conditions and limitations are often the people who are most vulnerable, and many rely on the health insurance coverage and guaranteed salary offered by traditional full-time employment. Statistics show that the percentage of the workforce that freelances is only going to continue to grow as the post-recession economy remains sluggish and companies can save resources by outsourcing work to contractors. On one hand, that seems liberating for some people. But asking those already at risk to invite and endure further uncertainty by working on contract, or to worry about finding and affording their own health benefits, seems like a particularly volatile, unfair situation into which many may feel increasingly forced.

As much as I’m an evangelist for freelancing, I’m also an advocate for being empowered to meet your own needs. It shouldn’t be up to individuals to wage every wage battle on their own. But until there can be more open discussions about the limitations people face in the workplace and better policies to support a wider range of worker, we might have to keep oversharing with our employers, and with each other.


Dr. Wrong

Finding a doctor who can diagnose your seemingly undiagnosable condition isn't like dating. It's worse.

Two years is a long time to have a headache… especially when diagnosis is always just out of reach.

I’ve landed myself an appointment at the University of Colorado Hospital. Although this will be my fourth neurologist, none of whom could figure out what was wrong with me, this appointment feels important somehow. Like I am taking a step up in the medical world: the University of Colorado Hospital is a research hospital.

Author Stephanie Harper has had a headache for the last three years.

My last neurologist’s parting advice was that, in his opinion, the only thing left for me was to consider a surgical option, a neurostimulator. He made it seem dire, as though this was a sort of Hail Mary, my last chance at any kind of relief for the constant pain I’ve been in since my headache started. But surgery sounds scary and permanent. The idea that a pacemaker type device would be put inside my body, that wire leads would be placed in my occipital and/or peripheral nerves is terrifying. But the idea is also action-oriented, and I so desperately crave something to be done to help alleviate my pain—which has been unremitting these last many months—that I am willing to try anything.

So for four months, I wait: an eternity of excruciating tedium.

My baseline headache, that pesky pain behind my right eye, is a constant companion, and the days tick by slowly. I do my best to keep slogging through my daily routine. I’m doing freelance work as a writer and editor, while also looking for a part-time job to supplement my income. The problem is any job that can lead to any kind of over-exertion can cause my pain levels to rocket off the charts, putting me out of commission for hours or even days.

Some days, my headache spikes to an extreme level. My head throbs, I can’t see, I’m nauseous and dizzy and can’t be on my feet any longer than it takes to get up and go to the bathroom. My whole body aches and tingles, waging war against me. I don’t get out of bed. On those days, the wait is unbearable.  

Then, the day finally arrives.

The Appointment

My mother and I make the 40-minute drive out to the big medical campus in Aurora. It’s overwhelming. The hospital parking garage is so full we park on the very top, out in the open. It’s a March day, so it’s chilly, but the sun is shining. As I walk inside and find my way to the headache clinic, I think: This place has to make a difference. Has to get things done. I’m confident that I have found what I’ve been searching for. A temple for the answers I’ve been seeking.

Then, I meet my doctor. Or I should say my Fellowship Resident.

I go through the complete history of my headache saga, which feels so rehearsed I could be performing a soliloquy.

“When did your headache start?” he asks me.

“October 28, 2013.”

“Any precipitating event? Injury? Illness?”

“No.” I twist the strap of my purse in my hands. The truth is, I woke up with the initial pain behind my eye that morning, and it hasn’t gone away since.

He scrolls through my chart on the computer. “I see that you’ve had MRIs and they’ve come back normal. Any other tests?”

“I’ve also had an MRA. And an EKG and heart ultrasound. And a lumbar puncture. Plus, all the blood work.”

“All normal?”

I look down at my feet. He has the answers right there in my chart already. Asking me about all of this feels like he’s rubbing it in… like I’ve failed a test or something.

“Yes,” I force myself to answer.

He writes a few things down on the paper I handed him when I came in: a survey asking me about my pain levels for that day.

“Can you give me a list of the treatments you’ve tried?” my Fellowship Resident continues.

Maybe it’s just helpful for him to hear me list it all out instead of digging through months and months of medical history. I try to see if I can remember them all. The list goes something like this: “Dilauded, Imitrex, Verapamil, Topamax, Gabapentin, Nortriptyline, Propranolol, Lithium, Botox, Nerve blocks.” He takes more notes and I feel less like a dramatic actor and more like an eyewitness for some terrible crime.

When we finally get to a stopping point, he asks me: “What do you hope to get out of today’s visit? Are you just looking for a second opinion?”

My stomach drops.

“I was under the impression that I was here for a surgical consult on an occipital nerve stimulator,” I stammer.

“Oh,” he breathes, and his eyes widen. That may be why I’m here, but it’s not why he’s here. “I don’t do that procedure. I’m not sure anyone here does.”

Doctor Wrong

I feel the tears welling up in my eyes and I bite my lip.

I don’t want to cry because once I start, I’m not sure I can stop. Also, he’s young and I like his red beard and glasses and he’s not wearing a wedding ring. This should not be something I’m focused on in this moment, but I notice these things and the thought runs through my head anyway, and now I just feel worse about potentially making a scene in front of this potentially-eligible wrong doctor bachelor.

So, I don’t cry. And I don’t explode at the absurdity of this situation. I take a deep breath and explain how long I’ve been waiting for this appointment, how much hope I’ve pinned on this day. I can tell he is sorry, and perhaps a little embarrassed. He tells me it was probably a clerical error somewhere in the referral process. Then, he exits to discuss the situation with his supervisor.

He leaves the door cracked open. I sit for a few minutes in silence, texting my mother who’s sitting in the waiting room, explaining what has just transpired. I can feel her anger the way you sometimes can, even in a text, no exclamation points required. I am shaking with disappointment. Just not crying is taking real physical effort. The fluorescent lights of the exam room bear down on me, as they always do, and I can feel my headache pain begin to flare under the surges of overwhelming stress I’m suddenly feeling.

Then, I hear them in the hallway. It’s almost an out-of-body experience, hearing him recite my story.

Once again, I am my headache. No name, no distinguishing features, just a list of symptoms.

26 years old. Debilitating headache. Almost two years. Quality of life greatly affected.

This is what I look like on paper, how my very complex situation, my life, is summarized by medical professionals. It makes me squirm. I’m a child listening to her parents talk about her behind a closed door. More than that, once again, I am my headache. No name, no distinguishing features, just a list of symptoms.

When he returns, I can feel my face and chest flush with an awkward sort of embarrassment, as though I’ve been caught peeping.

It turns out there is a doctor who knows something about the procedure, who might be able to help me, or at least provide me with some information. He tells me he will refer me right away and that I should go ahead and make an appointment, pending approval.

It turns out I can’t make an appointment. I have to wait for my referral to be processed once again. They’ll call me. After a week of hearing nothing, I call them. The earliest I can get in to see this new doctor is another three months away.

So begins another season of waiting.

And when that appointment comes, after three months of waiting, this next doctor will tell me that I don’t need surgery. He’ll say neurostimulators aren’t a good option for any headache sufferer, and will present me with compelling evidence to support why he thinks so. And so I start all over again: a circular path of treatment after treatment that never goes anywhere, and never gives me relief.

My headache will continue. Leaving me just one choice: on this long road, I must somehow make peace with my pain. Because I don’t have a choice.

Awaiting Dr. Right

Today, as I wait for my newest referral to yet another specialist and try to play games with Medicaid, I think back about my one time meeting with the Fellowship Resident. 

He was the wrong doctor on that particular day because a clerical error put me in his office instead of the office of the neurologist I was meant to see.

And, that neurologist has perhaps turned out to be the wrong doctor because I have not responded to a parade of treatments the way he had hoped.

Similarly, my third neurologist–the one who referred me to my red-bearded resident–was Dr. Wrong, because he ran out of ideas to treat me.

And the one before him was Dr. Wrong too.

It sometimes seems like being bad at dating, because there’s certainly a pattern. And the pattern would suggest, at times, that there is no such thing as Dr. Right. At least not for me. What hope do I possibly have?

But I can’t give up. Even when it feels foolish or naïve, this optimism is also a fundamental part of who I am. And I need it. I need it to get out of bed in the morning and keep going despite the fact that I can’t remember what it feels like to not be in pain. And I don’t think it’s wrong to think that the right doctor is out there.

I may not have met Dr. Right just yet… but I’ve met pieces of him.

Because while my Fellowship Resident might have been the wrong doctor that day, he still treated me with concern and compassion. And he’s not alone: my primary care physician, who has been my doctor for over 15 years, has stuck by me throughout everything, supporting me and validating my suffering. He never downplays what I experience, what it means to be in pain every minute of every day, or the effect this has on me physically and emotionally.

So I may not have met Dr. Right just yet… but I’ve met pieces of him. These men are glimpses of the right doctors who, I believe, can help and heal me. I am not so naïve to think there is a magic bullet for whatever is the root of my pain, but I do think I can continue to look for ways to manage and maintain, to fight for a means to a better life, and to hope for some kind of answer to come to help better understand what is happening to me and my body. I have to hope that there is an answer out there, waiting to be found, and that when I meet Dr. Right, he will be ready and willing to search with me for the key.