Chronic Pain

Hands As Big As Pillows, And Other Weird Migraine Symptoms

Aphasia, hallucinations, and synesthesia are all proof that there's more to a migraine than just a bad headache.

“Something is not right,” I told my husband on a Saturday afternoon six years ago. “My hands are impossibly large. I know they look normal, but I can feel them getting bigger.”

I can’t imagine how confused he was. I was just as confused… something mysterious was happening inside my brain to skew my body perception so drastically. I laid down on the bed, and suddenly, my right hand was as big as the pillow it rested on. My left hand was the size of the mattress. Whatever I touched, my hands assumed that item’s approximate size and shape. My feet stretched far away as if being pulled through a vortex. I tried to calmly explain, but my tongue was growing too. How did it still fit in my mouth?

I could see that my body parts were their usual size, but nothing could reconcile what I saw with the sensation that I was suddenly impossibly out of proportion. That day I had my first experience with Alice in Wonderland Syndrome, a rare migraine symptom which can also occur with seizures and some infections. “Becoming” Alice is so rare, I had never heard of anything like it in decades of migraine experience. For once, Googling symptoms would console rather than devastate me.

My left hand was the size of the mattress. Whatever I touched, my hands assumed that item’s approximate size and shape.

It was hard to find the right words. I started searching: “hands feel gigantic”; “hands seem to be growing”; “tongue feels too big”. I was relieved to find others describing the experience as a pre-migraine symptom.

I’ve logged 30 years of migraines, with wide variation in severity and frequency. During better years, I go months without a headache. In bad times, there are 2-3 per week. I experienced the worst end of that spectrum during fertility treatments and pregnancy. Leading up to the afternoon I became Alice in Wonderland, my migraines had been increasingly frequent and intense  — and bizarre — due to stress and hormone fluctuations during fertility treatments.

Migraines Are More Complex Than Just Bad Headaches

A lifetime of migraines teaches you that your own senses can’t always be trusted. A fresh brownie tastes like fish and onions? Migraine’s coming. Fingertips feel like I’ve been clutching ice cubes? Migraine’s coming. They have struck during final exams, date nights, vacations. Live with migraines long enough, and you will experience one for every type of situation.

Senses betray the migraineur, and sometimes words do too. At the conclusion of a summer vacation in Cape Cod, my husband and I started to argue in a long airport security line. I looked at our tickets, but didn’t know what to do next. My husband became frustrated.

“I don’t understand,” I pleaded. “I can hear the words you’re saying, but I don’t know what you mean.” It was as if the English language had been excised from my brain, and only interrupted signals were left.             

A few weeks later, I was riding down the highway (not driving, thankfully) when another migraine started. Suddenly all the billboard writing was backwards. I thought, “Why would they print those signs backwards?” Then I realized my misfiring brain had played another trick.

Even one of migraine’s most common symptoms, the aura, can be incredibly varied and hard to describe.

Even one of migraine’s most common symptoms, the aura, can be incredibly varied and hard to describe. Only about one quarter of migraine sufferers experience aura, the psychedelic prelude to a headache when everything temporarily goes sideways. Visual disturbances are the most common symptom of aura. For me, it starts with a bright spot in my vision, like I’ve been staring at the sun. The spot grows until I can’t to read or drive. To say I’m blind feels melodramatic, but how else do you describe the experience? Within an hour, the blindness fades into a throbbing, clammy pain. Some sufferers seek quiet or dark; my headaches are relieved by little but sleep.

If You Have ‘Weird’ Migraines, You’re Not Alone

I belong to some online communities where migraineurs share their symptoms, treatments, and commiseration. When asked to describe their visual auras, community members gave these vivid answers:

“For me, it was like using a charcoal grill — when you squirt the lighter fluid and everything looks blurry, wiggly and ‘confused’ as the gasses rise in the air before you ignite the fluid on the coals.”

“Mine are like like small, fiery wheels with jagged zig-zag edges.”

“I have swaying and pulsing lights (with my) auras. It’s accompanied by sounds, one is like a ‘waamp waaaamp’ and another is a screeching sound. I’ve had them since I was a kid so at that age I likened it to a witch’s cackle.”

“I’ve gotten what I call ‘disco lights’ (a doctor-friend called it ‘dazzle’) and giant, sparkly lightning bolts.”

“It‘s a bit like a kaleidoscope. Actually, it’s exactly like a kaleidoscope, only not as narrow a point of clarity in the middle. It’s all peripheral.”

Just by following these collections of strangers who also experience migraine, I have begun to appreciate the breadth of migraine suffering. Some can make jokes about it or have enough good days to reflect on the agonizing bad days. Others are literally disabled by constant pain.

I remain grateful my good days still outnumber my headache days. And I get lost in fascination with the strange rabbit holes my brain can conjure.

Chronic Pain

I’m A Refugee Addicted To Painkillers In Canada

But when you have chronic pain and have to work 12 hours a day in a factory or else people back home starve, what's the alternative?

I am a refugee, working a factory floor job here in Canada. For years, I have lived with chronic back pain.

My days are long. I wake up at 5am to commute two hours each way for a menial 8-hour shift cutting fabric for clothes, the only job a refugee like me can easily get. 12 hours out of the house altogether, and I labor through it all with a piercing back pain that I have lived with for years. At worst, it feels like I am being pierced with needles; at best, it feels like an uncomfortably prickly hug.

To ease my discomfort, my doctor has put me on painkillers: a mixture of acetaminophen and naproxen. I dread looking at the label: “Taking more than the recommended dose for more than two weeks may cause liver damage.”

I feel an overwhelming urge to prove myself as worthy of my adoptive country, and so I work this grueling factory job despite my pain.

I am on month four of taking these pills. I binge them almost in defiance of what they are almost certainly doing to my liver. When I’m honest with myself, I admit I’m probably addicted to them—I find myself popping more even for light pain now–but I can’t just stop taking them, even if I wanted to.

A handsome man from Zimbabwe wearing a blue suit, with a bald shaved head.
Author Ray Mwareya.

As a refugee in Canada, I need this factory floor job. The alternative isn’t homelessness, necessarily–Canada has a fine public welfare system–but I dread being a burden to this country that took me in, that gave me a home, that sheltered me in my house of weakness. I feel an overwhelming urge to prove myself as worthy of my adoptive country, and so I work this grueling factory job despite my pain, even as I’m sure it is taking years off my life.

Even if I didn’t feel this sense of patriotism, though, I couldn’t go on welfare. I come from Zimbabwe, a broken country where public clinics don’t have even paracetamol, and where the local currency is so worthless that people wash and hang up old U.S. dollar bills to dry. I have family there, who need the money I send back: if I give in to back pain here, they may well give away their lives to hunger over there.

Where I come from in Africa, opioid addiction isn’t common, even if chronic pain is.

Where I come from in Africa, opioid addiction isn’t common, even if chronic pain is, because painkillers are impossible luxuries that almost no one can afford. So sometimes, I feel almost bemused by the fact that, as a refugee living in Canada, my circumstances have changed to such an extent that I could be on the edge of painkiller addiction myself.

Yet, what is the choice? My pain is very real, and most of the time very excruciating. I can not afford to stop work, even though it’s making my back problem worse. In the factory, I see women in their 40s with braces strapped around their mid-sections packing boxes with gritted teeth: their backs are finished. And I know, eventually, this is my fate too.

This is the dilemma many refugees face. Politicians and media pundits cast people like me as undesirable, unemployable addicts taking advantage of the system and sucking up welfare, but the reality is that I am an addict because I won’t take the help of the system, or take welfare. I’m a painkiller addict because I work hard, and I can’t ever stop to rest.

Pain comes for everyone. But for people like me, it doesn’t stop until it takes us away.

Pain comes for everyone. But for people like me, it doesn’t stop until it takes us away. Which is why I laughed when my boss the other day asked me to fill out paperwork in case I get hurt on the job, in which case they’ll pay medical expenses up to $20,000.


She asked me if I had any dependents, and I said no. “You need to put a next of kin down,” she said. “If something happens to you, the company will still need to pay anything left over to your survivors.”

I laughed. “My unrelenting back pain will gobble all of this up. Nothing will survive me.”

Chronic Pain Essays

How Imaginary Light Soothes My Chronic Pain

I was skeptical that guided imagery could help my rheumatoid arthritis. I'm pleased to say I was wrong.

I thought I misheard the instructions.

Visualize a white light entering the crown of the head and gently flowing down the spine. Let it settle where you feel tension or pain.

As I reclined on my yoga mat, confused, I wondered when we would get to the stretching and poses that would help the inflammation move away from my tender joints.

Instead of exercising, I’m painting pictures of wispy clouds with my imagination and trying to get them to permeate my body? Come, on! I need relief!

I took a long inhale and tried to make this work. The teacher must know what’s she’s talking about. Give this a chance, I told myself.

Give this a chance, I told myself.

So, I questioned everything. What does a spine look like? How do I get light to settle into my joints? Is anyone else actually doing this? What should I make for lunch? This is silly.

Breathe. Focus. You can do this, Angie.

I like a challenge and stuck with it. After all, this class is called therapeutic yoga and geared at folks like me, so here I am, surrounded by friends with rheumatoid arthritis, Crohn’s Disease and other autoimmune conditions.

The instructor, a certified yoga teacher and physical therapist, spoke with soothing confidence that kept me on track.

Light. Joints. Pain. Got it.

I kept visualizing and eventually changed my internal story from clouds to sun rays. They could somehow penetrate better and were ample for the harvesting from the glowing orb that took over my mental vision.

Feel the warmth of the light. As you inhale, bring it all in. Let the light flow through your body.

As the minutes ticked away, this weird-to-me exercise (known as guided visual meditation or guided imagery) started to play out like a movie, or maybe a dream. I simply noticed the images and observed.

Light. Joints. Pain. Got it.

Swirls of white light inhales coiled around my vertebra and came to a slow, floating halt around my hip bones, which looked like parts from a Halloween skeleton decoration in my mind’s eye.

Hmmm. I’ve got this.

My next inhale was robust and audible. I paused at the top to let the sunrays work their magic, then sighed long out my mouth. As the air exited, my body sunk deeper into the yoga mat, allowing my muscles to relax. Tension melted away.

I listened to the verbal cues and then as quick as it started, we were instructed to wiggle our fingers and toes to wake up the body.

What just happened? I didn’t have time to think and instinctively followed the next instruction, which involved getting on our hands and knees, in a table-top pose. The instructor’s voice began to fade as my attention moved to my physical body.

My hip pain was… almost gone. My wrists weren’t aching. What was happening?

My hip pain was… almost gone. My wrists weren’t aching. What was happening?

The Arthritis Foundation says guided imagery is a “scientifically validated way to relieve pain, stress, anxiety and depression.” The power of your thoughts indeed influences your physical health.

I know that visualization works, and now it’s a regular part of my yoga practice. This experience also planted a seed for a new habit — off my yoga mat.

When my body is physically uncomfortable or I feel overwhelmed with the tasks of the day, I take a few moments and visualize my body being bathed in white light from those sun rays.

I change my internal story from words of frustration and anxiety to hope and healing. I tell myself I’ll feel better.

You hear the old phrase “mind over matter”, and for me, it works. It takes time to trust the process, but once you can quiet your mind and conjure up images of healing, the brain somehow forgets to send out pain signals.

A little imagination and an ounce of curiosity is all it takes to give it a go for yourself.

Chronic Pain Essays

How Chronic Illness Helped Me Perfect My Craft

By writing poetry about the migraines that have afflicted me since my twenties, I gained a mastery over my craft I might otherwise never have found.

Poetry struck me before I was diagnosed with migraine headaches. I don’t remember when I wrote my first poem. My mom and dad both wrote poems regularly, and I grew up believing it was something everyone did. As necessary to daily life as reading books.

In high school, my English teacher Mrs. Wallace encouraged me to write more, and showed me how to edit and polish what I wrote. Thanks to her support, I published my first poem when I was fourteen.

I gave up writing poetry in my mid-twenties, at around the time I began to have “sick headaches,” and ten years before migraines began to make themselves a regular part of my life. I stopped writing because a male college professor told me my poetry was no good because I didn’t write like a man. I don’t blame him for the headaches, but his words certainly contributed to my self-doubt.

I gave up writing poetry in my mid-twenties, at around the time I began to have “sick headaches…”

I began writing daily in my forties. I wrote plays, short stories, but never a poem. I didn’t believe I could write poetry, but I felt confident about my plays and short stories.

At first, the migraines came only twice a year. Over time, they became more frequent so that I was making regular trips to the emergency room, and seeing my neurologist more often than my internist.

After years of preventive medication, rescue pain relief, changes in my diet, additions to my exercise routine, and trying every possible migraine remedy I heard or read about, the migraines became chronic and I was at their mercy every other day, sometimes for days at a time.

My writing suffered even more than I did.

Sandra de Helen.

After trying one remedy, which entailed drawing my headaches, and I realized the drawings looked almost the same. One day I remembered that the art I’m best at uses words as its medium. I began to write migraine poems.

Given the frequency of the headaches, I wrote a lot of migraine poems

The accepted wisdom is that if a person spends ten thousand hours practicing their craft, they will master it. If that’s true, I am a master migraineur.

What is true for me is that by writing migraine poems even when I was incapable of writing other poetry, or writing anything else at all, I was honing the craft of poetry.

The accepted wisdom is that if a person spends ten thousand hours practicing their craft, they will master it. If that’s true, I am a master migraineur.

Unlike the drawings I made of my headaches, the poems became more nuanced, better at metaphor, included symbolism, and had meaning beyond the experience of pain. I went from writing about the pain to describing the migraines as a stalker, a jealous lover, a heartless guardian. I wrote about headache experiences and found they reminded me of other experiences in my life. I wrote different formats such as haiku and senyru.

Writing while under the influence of pain taught me how to block other distractions, how to hone in on making my work better no matter what life tossed me.

I had given up writing poetry after one bad experience. Years of writing while experiencing intense pain allowed me to return to the craft, to once again call myself a poet.

Creative Commons photo by Mathilde Audiau.

Chronic Illness Chronic Pain Essays Rare Diseases

How Chronic Illness Slowed Me Down For The Better

Maybe being happy is more important than how productive you are.

I’ve worked hard my whole life. I’m the kind of person who can’t even fathom taking a break until the day’s work is done… and when it is, I’m still looking for another project to better myself. No one had ever accused me of being lazy before.

Yet the moment I got sick—as soon as I needed a break and have people take care of me for a change–it seemed like everyone came out of the woodwork to insinuate that the real problem was my laziness.

Too Busy To Slow Down

I was first diagnosed with rheumatoid arthritis at 26, after a busy holiday season in which I’d planned an office party for 200 people and published my first book. As my company’s sole event planner, digital marketer, receptionist-slash-office manager, and community action coordinator, it was my job to make sure everyone else was happy, even at my own expense.

Despite enjoying the work and gaining valuable experience, it was often more stressful than the construction management job I’d just left, and the initiatives I’d worked so hard on did little to boost employee morale. I wasn’t in a position to create real change despite expectations and it left me discouraged, but I needed this job. I had rent to pay, and I’d found so many flaws with my previous jobs that my resume had lost focus.

I was exhausted, and I thought that was normal. My boyfriend suggested I see a doctor, but I brushed it off: I didn’t have time to see a doctor.

An Unexpected Diagnosis

But it was inefficiency that eventually caused me to cave. Trying to wrap a small pile of Christmas presents, I could barely do it because of a recurring pain in my hand. For two weeks I brushed it off, letting the pain grow until I kept dropping things, and even grabbing an object the wrong way had me shouting in agony. So, I used some personal time at work, convinced I was wasting it, and went to the doctor.

I’ll never forget the pained look on my doctor’s face as we ran through my symptoms.

I’ll never forget the pained look on my doctor’s face as we ran through my symptoms. He discovered swelling in areas I hadn’t even had pain in yet. A week later, after a day of feeling like I had shards of glass in my wrists making it impossible to even hold a door open for someone, I got the call: my bloodwork showed that I most likely had rheumatoid arthritis.

I knew what rheumatoid arthritis was. I suffered from Raynaud’s Phenomenon as a teenager, when it was explained to me that with my family’s history of lupus, rheumatoid arthritis might be a further risk. I knew the disease for causing debilitation, reducing lifespans, and forcing early retirement. Meanwhile, I defined myself by keeping busy. What did this mean for my career, my home life, and my dreams to travel, which I hadn’t even started? Because of my pursuit of a stable career, I had barely left my home state of Massachusetts.

No Sympathy From Work

Within months of my initial diagnosis, I’d spent thousands of dollars and used up nearly all of my personal time. While my manager and HR knew vague details about what I was going through, I fielded jokes from others who did not. “Taking a half day to play hookey?” staff joked, not knowing how many vials of blood I was about to get drawn, or the way dozens of miles of driving fatigued me. Comments were made when I stopped washing other employees’ dishes because I now had problems holding glasses. Multitasking left me winded, and people raised their eyebrows when I spent less time glued to my desk and more time stretching. Was I imagining dirty looks because I took so many half-days? I wasn’t. Coverage for my job became a serious issue, in part because there wasn’t even a plan in place for when I took a routine vacation. I snapped when someone told me that my absence was truly felt. What about what I felt?

Was I imagining dirty looks because I took so many half-days? I wasn’t.

The solution seemed to be to transfer to another department so I could work from home. However, I continued working both the new and the old position for months, giving both my all. Despite doctor’s orders not to overexert, I still did work that landed me on my couch for days afterwards. When it was suggested that I not be paid for helping my company pull off an event I endured physical pain to produce, it confirmed what I already knew: a corporate job like mine wasn’t going to work for me anymore.

Finding Support Online

A pretty young woman smiling into the camera with her dark hair parted down the middle.

Ashley Dufault.

I desperately needed relationships with people who understood that I wasn’t lazy, so during this time, I grew close to the rheumatoid arthritis community on Twitter. There, I met people like me who had had to adapt because of rheumatoid arthritis by leaving their careers, working part-time, becoming freelancers: each was someone, like me, who had been whipped into a vortex by rheumatoid arthritis, and had been forced to question their values. One woman admitted to me that she’d downsized her house and sold her business to create a lifestyle she could be happier with.

“And the fatigue? It never really goes away,” one Twitter poster told me bluntly.

I fought hard against my fate. I tried aromatherapy, exercise, long walks: anything that might help keep my symptoms at bay, and give me my old momentum back. But nothing worked, and on my long evening walks, I would mourn the me that used to be, and all the problems in my personal and professional life that rheumatoid arthritis had caused.

Then, one day, I didn’t care as much. My values shifted.

Being Happy Is More Important Than Productivity

Maybe it wasn’t so important to constantly be achieving. Maybe what was important was to accept yourself and live the life you’ve been given to the fullest. Maybe being busy is less important than being happy. And maybe I don’t owe the people who think I’m being ‘lazy’ because I’m chronically ill a damn thing.

Maybe I don’t owe the people who think I’m being ‘lazy’ because I’m chronically ill a damn thing.

Rheumatoid arthritis forced me to put the brakes on “efficiency” and slow down long enough to chase my dreams, not just my next task. So instead of continuing to work a job that was pushing me to my limits, I decided to believe in myself and pursue one of my dreams: my own writing and editing business. I now have clients who appreciate what I do, and I’ve even finished the first draft of my second book.

Most exciting of all? The woman who was too busy to leave New England is finally going to follow her dreams and do some travel. I have a vacation scheduled to visit a different region of the U.S. this year. It’ll be my first time on a plane, and next year I hope to visit my first foreign country.

Creative Commons photo by Jerald Jackson.

Chronic Pain Essays Rare Diseases

In Defense Of Oversharing

When you live with a chronic condition, getting comfortable with vulnerability may be your greatest strength.

When a beloved pet, like a cat, gets sick, it hides under the bed and refuses to be touched.

It’s the same for people. When we’re diagnosed, there’s an instinct to turn inward.

When I suddenly began experiencing pain as the result of a rare spine defect, that was what I did: I turned inward.

I was completely bewildered by the abruptness and severity of the symptoms. It felt surreal: in one moment, I was going for runs along the Charles River and picking out the right blazer for speaking engagements. In the next, it hurt to walk a block or brush my hair.

How could things have gone so terribly wrong?

Keeping My Chronic Pain Secret

I desperately wanted the pain to be abnormal, and so I treated it accordingly—like an unwelcome houseguest that might leave if I ignored it. To acknowledge that my health problem was real or was serious, whether to myself or someone else, felt like a betrayal.

It’s hard to talk about a hurricane when you’re in the middle of it; I was busy battening the hatches and trying to survive. If asked how I was doing, I couldn’t spit out the simplest, most cursory of truths—“I have a back problem”—without wanting to sob. It was too real, too raw.

So I avoided telling anyone about the extent of my health issues and how much I was struggling, unless it was completely unavoidable. Think: my boss, my boyfriend, my roommates.

The Hard Price Of Privacy

The result of my secrecy? My pride and privacy remained intact, even through chronic illness, but inside, I felt just so utterly alone.  As months passed and my normal life—working full-time, exercising, volunteering, social plans—became nearly impossible, it became harder to pretend things were OK.

Once the one year anniversary of my symptoms’ arrival came and went, I realized the pain was here to stay, and that I didn’t have much choice but to open up.

For one, I needed people to know what was me and what was my health condition. If I flaked out on weekend plans, it wasn’t because I was unreliable: it was because I was having a bad pain day. If I needed help lifting a bag, it wasn’t because I was a diva: it was because my shoulder muscles were being uncooperative jerks.

I discovered I needed the support of the people I’d been keeping out of the loop. My friends and family members aren’t mind-readers: I realized that if I didn’t open up and tell them what was happening, I was shutting them off from truly understanding me, and therefore, helping me.

I also became indignant. When I became sick, I was the healthiest and strongest I’d ever been, and since, had done everything I humanly could to cure myself. In short, I’d done nothing wrong. My birth defect wasn’t my fault, so why should I live in shame because of it?

Sharing about my chronic pain was an act of rebellion and defiance.

A beautiful girl in an aqua tank top with brown hair and glittery earings smiles and looks up.

Emily Lemiska. Photo: Ars Magna Photography.

Opening Up Online

So I began to talk about what I was going through.

It started with Facebook posts and duck-face selfies in hospital gowns. Life is a mixture of ups-and-downs, so I was careful to share both my hardships (like getting frustrated with an insurance coverage denial), and the triumph (like figuring out some yoga poses that didn’t hurt). Eventually, I started my own blog and began submitting the occasional story about my experiences to small news sites.

Turns out, oversharing is amazing.

When I was honest and candid about my new reality, people rallied around me. If I posted about having a particularly rough patch, they knew to call and check in. When I explained the mechanics of the defects in my neck and how it affects my body, people began to understand and anticipate my limits without me having to remind them what I could and couldn’t do.

I also finally felt seen. Every human being wants to be understood and validated. We want to feel connected. I needed people to recognize the full picture. Yes, I am still the girl who laughs too hard at terrible puns, who puts her whole heart into her work, who is obsessed with her cat.  But I’m also the girl who lives with a disabling health problem, who has had to become braver than she ever wanted to be. I needed to share the full picture of me: the good things and the hard things.

Giving My Pain A Point

But the most wonderful thing of all about oversharing? It helped people.

I started getting comments about the stories I wrote, emails from strangers. “To read about other people sharing their stories makes something good happen in me,” said one person. “Everything that was written sounded like my EXACT story, feelings, and words. It’s not often someone knows exactly what you are going through,” wrote another.

In sharing, my pain had a point.

I’d also hear from friends and acquaintances who were going through something similar or knew someone who was—people I had no idea could relate to my experiences—and wanted to talk.

This ability to helping others feel less isolated, in whatever small way, began to make oversharing feel not just like a choice, but a responsibility.

In sharing, my pain had a point.

How To Share

Of course, there is a right and wrong way to approach sharing. You need to pick the right time, place, and person. It’s easy to alienate and overwhelm people with details about chronic illness, so instead of revealing your entire life story in one breath, share a tiny bit of vulnerable information at first. Let them ask follow-up questions or wait until they open up with you about themselves; that way can reasonably assume they’re interested in hearing a bit more.

It’s also important to consider why you’re sharing personal details. Are you doing it because you just want to be honest, or is it because you want to vent or get sympathy? When you’re opening up, make sure you’re doing it without a particular agenda. The only good reason to share is the simple desire to be authentic.

As folks with chronic health issues know better than most, life is just too short, and too precious, for small talk.

Once you figure out the best approach, give it a try. It doesn’t have to be about your health—it could be anything. What is the thing that makes you feel different or alone? What is the thing that makes you feel passionate or excited? What is the thing that makes you feel vulnerable or scared?

Talk about it! Maybe even… overshare about it. As folks with chronic health issues know better than most, life is just too short, and too precious, for small talk.


Even though Emily had to leave full-time work because of her health, she now works part-time as Director of Communications for the U.S. Pain Foundation, an organization that believes in the power of patients telling their stories as a way to advocate for change. To learn more about the U.S. Pain Foundation or view its INvisible Project magazine, which highlights the stories of people with pain, click here.

Top photo credit to Michelle Gardella Photography.

Chronic Pain Essays

How My Chronic Illness Taught My Four-Year-Old Son Empathy

I never thought anything good could come out of my migraines. Then I had a son, and they became a tool to teach him life's most valuable skill.

I like things to be predictable. I revel in the knowledge that summer is hot, winter is cold, and should I choose to indulge in too much cheese, I’ll sweat like I’m wearing a winter coat in summer.

My migraines themselves are even more predictable. I may not be able to foresee when or where one will strike, but they’re painfully predictable in their structure. Once the cycle begins, I can count on the red-hot pain in my head, the nausea, and the chills.

My biggest migraine surprise, however, has been observing my four-year-old’s reaction to them. It’s like nothing I could’ve predicted.

My migraines are the great crowd displeaser. My neurological condition takes away days of my life, leaving friends and family behind. They force me to cancel plans and rearrange schedules in favor of spending the day in a darkened room with a scorching-hot hibachi grill attached to my noggin. The adults around me see this, and it’s a strain maintaining our close relationship. My son, Richard, sees this and simply sees his mom.

For Ritchie, I’ve always been a mom with migraines.

For Ritchie, I’ve always been a mom with migraines. He knows me as the loving parent who can throw the best bathroom dance parties and the mom who hides in the bedroom because of the sickness in her head. I’m both of these people, and he hasn’t tried to separate the two to make one sick and one healthy. Unlike others in my life, he has never tried to seek control of the situation by fixing it. These are the tricks that friends’ grown-up, healthy brains employ to make better sense of my affliction, a kneejerk response to the feeling of powerlessness that most of us get when we’re confronted with chronic and insensible illness

My son takes an altogether different route.

“You will feel better! You’re with me,” Ritchie whispers in my ear during a full-blown attack.

A mother and her four-year-old boy laugh together outside at a Renaissance Faire.

Me and my son Ritchie at Ren Faire.

My son has managed to always do the one thing others have missed: just love me. His sense of empathy has grown along with him, and I find this incredible because all I see is the pain my migraines cause. I’m constantly waiting for the other Converse sneaker to drop. How will our bond continue to develop if I’m not able to give Ritchie the consistency I feel he needs?

Even if math were my strong suit, I wouldn’t be able to calculate how many hours I’ve spent crying thinking about how I don’t want my health to hurt the connection we share. That would crush me. I’d have to find a way to remove my heart because I simply wouldn’t want it anymore. I worry that it must be difficult to trust me to take care of him when it seems like I can’t take care of myself. Love and trust go hand in and hand, and my greatest fear is that he’d stop loving me because I’m not a constant presence. How could I blame him? Kids bond through play and consistency, and my migraines take away both.

My son has managed to always do the one thing others have missed: just love me.

With me not around to foster it, I’ve worried that our bond would simply wither away, what with me in bed all the time. Slugs aren’t much fun to play with, and a slug in bed with a migraine is even less interesting. My health might create a distance that I won’t be able to bridge. My head hurts and my heart aches. Part of a mom’s job is to fix what’s broken for her kids, but I’m not even able to even fix myself. Am I even a real mom if I’m not able to be there for my son?

A little boy with blond hair holds up a sign saying "I love you Mom"

My son knows that love means wanting someone to feel better, not for you, but for them.

“I’m always with you…” I hear Ritchie say as I lay there like a slug.

Each time I fear I’ve let him down by canceling a bath time disco party, he’ll knock me over with a supportive truth. “Mom, I’m here for you,” is one of his recent favorites. My little guy is only four, but in that moment I wonder how old he truly is. Then there are his words I replay in my head as secret mantras on rainy migraine days: “Mom, I’ve got you.” I pull that one out like an old family photo whose edges are frayed from too much handling. It stays in my heart always.

If words could heal, my migraines would have been vanquished the moment Richard learned to talk. His love is big, and the love behind his words is even bigger. He has said, “Maybe one day your head will say, ‘No more migraines!’” These wishes for me hold such a purity of spirit it resonates instantly in my gut. I’m surprised his level of belief hasn’t summoned The Blue Fairy from Pinocchio to grant his wish. His wishes may not have cured my head, but my heart has been healed a thousand times over. I can feel the truth in his words. A phrase as simple as, “Feel better,” takes on a new meaning because of its intent. Ritchie doesn’t need me to feel better so we can keep our date night or meet a work deadline. He wants me better because he knows I feel bad. His words are not just missives to placate my sickness or thrown together phrases of stuff I might want to hear. I was worried that our bond would wither away: Instead, it has flourished. Empathy is a powerful tool.

I was worried that our bond would wither away: Instead, it has flourished. Empathy is a powerful tool.

My migraines have given my kid the opportunity to practice learning empathy. This has helped him learn at a level most kids don’t have. During a recent 48-hour attack Ritchie tiptoed into the room to check on me. He quietly pulled up the blankets that had escaped to my knees all the way up to my shoulders and patted me. When I felt better later that night I swept him up into a huge hug and thanked him so much for his thoughtfulness. He smiled, proud of his actions. In a way, he has become his own instructor, translating for himself what kindness means and then sensing when his mom needs some.

My child takes this understanding everywhere. Sure, he can turn into a four-year-old and decide that sharing isn’t his bag, but when he sees a friend hurting he will always help. He cheers up our family dog when she looks sad and will rescue bugs from the pool. My kid will help friends he’s just met play games and has given over his favorite foods when his best friend has run out. His kind-heartedness doesn’t just stop with me. It is just as much a part of him as my migraines are a part of me.

My daily migraines are a pain. When they first started, I tried to find the positive lesson in them. I figured there must be a reason that I was experiencing this condition. I wanted to find the reason so at least the hibachi grill torment would have meaning. As their frequency and intensity increased, I couldn’t find anything of value in them. What’s the benefit in pure pain? Not much—was my conclusion. I would never have imagined anything positive coming out of these migraines. Then I had my son.

I would never have imagined anything positive coming out of these migraines. Then I had my son.

“I know this is hard.” Like a tiny fortune-teller with a crystal ball to my heart, Richard has managed to find the perfect words for me.

I’m amazed by my four-year-old. His ability to see me without all that adult pity and judgment is a wonder. His empathy continues to flourish, and our bond continues to grow. In his eyes, there is nothing broken about me. In my son’s eyes I am whole.

There are days I still try to give meaning to my pain and learn a lesson. I’m still doing a poor job; however my son seems to have mastered a valuable one. Empathy is a quality that some struggle with all of their lives, and witnessing it first hand solidifies how powerful a virtue it truly it is. My kid has pulled out a life lesson from my migraines that I’m happy to give him. He’s doing a better job at learning something than I ever did. Perhaps this is the better of part of parenting—teaching him the lessons I could never learn.

Chronic Pain Essays

Because Of Migraines, I Don’t Do Stuff

But hey, stuff is overrated anyway.

I don’t do stuff anymore.

Do I want to go to the special one-time-only movie screening? Yes, but I don’t do stuff.

Concert tickets? I would, but I don’t do stuff.

Check out the Renaissance Fair that is spread out over a mile of uneven ground? I just laughed so hard that I had to sit down and catch my breath.

Why don’t I do stuff? It’s simple.

A few years ago, the migraines that had been plaguing me since the age of twelve became chronic. That means at least fifteen migraine days a month. My record is twenty-two.

I’m not sure how long ago things got this bad. Between the brain fog and the sameness of days spent on the couch, the past decade is a blur. And stuff is a thing of the past.

I used to work full-time. I had so much energy that for a week in my twenties, I decided that I could save time by jogging everywhere in the office rather than walking. (I stopped when I realized that people probably thought I was running to the bathroom.) I used to hike and climb mountains for fun.

Now I wear a fitness tracker to make sure I don’t take too many steps: more than 3,000, and I end up at risk of a migraine. I walk to my chiropractor’s office two blocks away and exceed my quota before I get home. If I don’t rest for an hour or so afterwards, I’ll spend the entire afternoon in bed. When I hit my limit on the way to the car, I stop and tell my husband to go on ahead and pick me up.

Every migraineur has different triggers. For me, it’s overexertion, strong smells, certain foods, loud noise, weather, anger, frustration…you get the idea. Basically, going outside is my trigger.

Basically, going outside is my trigger.

Go to a backyard cookout, and the cacophony of toddlers and the smells of the barbecue alone will guarantee that I’m out of commission the next day.

I once went to a roaring twenties-themed party even though staying out past my bedtime would probably give me a migraine in the morning. The live band five feet away from the dance floor summoned the migraine fairy while I was still trying to Charleston.

I’ve had to beg my building’s super to dilute the floor cleaner so that I could leave my apartment without having to turn right back around for a pill and an ice pack.

I enjoy going to networking events, but all that standing and socializing guarantees agony the next day.

I love all my best and dearest, but I’m simply not going to risk crushing pain to see you perform with your improv troupe.

And forget about anything that requires buying an advance ticket. I can never be sure if I’ll be up to it. Pushing myself is an option, but a stupid one. The last time I tried that, I ended up watching The Hours, and wondering whether it was the quality of the movie or merely attending it that had given me a migraine.

I don’t make plans anymore because it fills me with stress and anxiety—two more of my migraine triggers.

Some migraines are mild enough that I can soldier on. But sometimes just shifting position in bed makes the pain worse, so showering and getting dressed are out of the question. I’ve missed baptisms, school plays, holiday dinners, and even a Doctor Who viewing party that was held in my apartment…. All because of migraines.

My friends and family understand when I have to cancel when they’ve invited me out, but I don’t make plans anymore because it fills me with stress and anxiety—two more of my migraine triggers.

Not that I’m a hermit. My husband and I go out spontaneously when I’m feeling up to it. We invite friends over for dinner and even the occasional party. I may have to spend the entire time on the couch with an ice pack on my forehead, but as long as people come to me, I can usually manage.

And when they can’t come to me, I head on out to Facebook or Twitter to see who’s around. Join enough online support groups and you’ll always find someone else who’s at home and online on a Saturday night.

Accepting my limitations isn’t the same as giving up. I’m meeting myself where I am today – a concept I learned back when I did yoga

Sometimes, people–even fellow migraine sufferers–accuse me of giving up by not making more plans, and consequently, risking more migraines. And sure, going shopping or dancing or whatever is a great bonding experience. But what’s wrong with a phone call? Or a conversation via Facebook Messenger? Or a video chat?

Accepting my limitations isn’t the same as giving up. I’m meeting myself where I am today – a concept I learned back when I did yoga. Thanks to a car accident when I was 11, I’ve had to tell more than one yoga teacher that, “My knees don’t do that.” But my long-suffering kneesies did what they could. And so do I.

Creative Commons photo by Davide Buncuga.

Advice Chronic Pain Explainers

How To Create A Chronic Pain Journal (And Why You Should Start One)

To beat your pain, you need to understand your pain. That's why spending just 5 minutes a day writing can be your most effective tool in fighting chronic pain.

I considered creating a pain journal for quite some time before actually starting one.

Before that, I always just pushed through my pain, and I suppose a part of me just hoped that it would eventually go away. After 19 years, though, what got me to start my first pain journal was the sudden realization about how little I actually knew about my pain when meeting my new rheumatologist. She asked me questions, while I was able to describe my symptoms very well, I knew shockingly little about the myriad other factors that could be influencing my pain, from diet to exercise and beyond. Then and there, I decided I need to know more precisely what was going on with my body so that I could collaborate better with my medical team.

Since I started my chronic pain journal, I’ve found the process helpful in other ways. I’m more aware of my pain in the moment, which helps me contextualize it better, as well as better appreciate the moments I’m not in pain. It has motivated me to take better care of myself by exercising or drinking more water, because I can quantify that I am less likely to be in severe pain if I do these things. Finally, having a written record of my pain allows me to better work with my doctor to aid in diagnosis as well as pain management, by allowing me to track exactly how well my medications are working.

If you, like me, are in chronic pain, one of the best things you can do is start tracking it. Here are some of my tips for getting started with a pain journal of your own.

If you, like me, are in chronic pain, one of the best things you can do is start tracking it.

What You Need

A pen and paper. Any notebook will do. If you are proficient at Word or Excel, you can also make pages that you can print out and place wherever you will do your regular recording. It doesn’t matter if you’re using a Moleskine or a stack of looseleaf paper: the important thing is to create a journal that you can take anywhere and that you’re comfortable using.

What You’ll Track

The following are the basic questions that any journal needs to be able to quantifiably track:

What hurts? The part or parts of your body that are currently hurting, identified as specifically as possible. While I experience pain in many parts of my body, I chose to track the worst three locations: my hands, feet, and neck. I suggest starting with three or less to make it easier to stay motivated.

When does it hurt? Here, you want to list where you were, what time it was, and what you might have been doing when the pain started.

How bad is the pain? You need a standardized measurement for pain so that you can see patterns over time. You could choose a very simple scale like “no/yes” or “none/some/a lot.” I chose to use the standard pain scale of 0-10 because I want to demonstrate more nuance than a shorter scale would allow. It is important to note that “no pain” is just as important to register as “a lot of pain,” because this will help you consider what is different about that day why the pain is gone.

A close-up look at my chronic pain journal.

How Often You Should Track?

At least daily. Habit research tells us that we are more likely to complete a task if done daily than when we skip days. But more is better. In my case, because I know that I have a rhythm to my pain throughout the day, I decided to track it several times per day, morning, afternoon, and night (although sometimes I fill in all of those points at the same time before bed).

Other Data To Track

Once you’ve gotten used to tracking your pain for a month or two in a very basic journal, you can start customizing your journal to your experience.

For example, I added a “comments” section under my pain scale, as well as more data points, measuring: activity level (measured from 0-3), exercise, medications or treatments I was currently trying, and hydration (measured by poor/average/good)

Activity Level — measured on a scale from 0-3 (3 being the highest)

Exercise – type/duration (for me, this is differentiated from activity level because it is focused time set aside for exercise and usually includes stretching)

Medications – type

Treatment – type

Hydration – measured by poor/average/good

Everyone’s pain is different, so your journal will likely be different from mine. Keep experimenting with what works for you, and what information you find useful!

Everyone’s pain is different, so your journal will likely be different from mine. Keep experimenting.

Stick With It!

A chronic pain journal is only useful if you use it consistently, but consistency can be hard to establish. I suggest you put your journal in a regular place, and tie your habit of logging your pain for the day with another habit you’ve already established: for example, if you take medications at a particular time every day, put your journal near your medicine and commit to tracking your pain at the same time as you take your pills.

Conclusion

Pain is exhausting, and sometimes the idea of adding one more thing to your to-do list when you are worn down feels devastating. But a chronic pain journal is a small commitment that anyone can make to try to get to the bottom of their pain for once and all. Don’t be hard on yourself if you miss a day or two: it’ll be okay, just pick it back up when you can. Some data is always going to be better than no data, so anything you can write down will help in the broader battle against pain. Think of your journal as one small thing you can do to try to understand your pain and use it as motivation to try new ways to lessen its burden.

Chronic Illness Chronic Pain Essays

My Son Gave Me A Kidney. He Has Been Chronically Ill Ever Since.

I'll probably never know if he got sick because he donated an organ to me, but after years of soul-searching, I'm determined not to let his kidney go to waste.

On May 15th, 2007, my 22-year-old son, Dylan, saved my life.

He donated a kidney to me.

It wasn’t my first kidney transplant. In 1993, over the span of three days, my renal function plummeted to 3 percent, leaving me in dire need of a new kidney. After what seemed like endless tests, I was diagnosed with ERSD, End Stage Renal Disease. But after surviving 5 years on hemodialysis, then spending 8 wonderful years with my first transplanted kidney, I became gravely ill again. For some unknown reason, my body rejected my anti-rejection medications I’d been taking for so long. By the time my symptoms appeared, it was too late to save my kidney.

My youngest son, Dylan, sat beside me on my hospital bed. At 6’3”, he was like a giant as he wrapped his arms around my frail body, enveloping me in hope and love. “Mom, I want to test to be your donor,” he said.

Doctors assured us he would be fine living with one kidney. After much discussion, the tests were administered, and he was a perfect match. On May 15th, 2007, Dylan and I were wheeled, side by side, on gurneys down the long, lackluster hospital hallways to our individual operating rooms.

And just like that, my life became mine again, thanks to my son’s gift.

It’s been 11 years since my son gave me his kidney and I remain healthy, living a normal and happy life. But I can’t say the same for my son.

It’s been 11 years since my son gave me his kidney and I remain healthy, living a normal and happy life. But I can’t say the same for my son.

Weeks after surgery, he began experiencing excruciating joint inflammation leaving him unable to walk or care for himself. He was initially diagnosed with gout. His rheumatologist prescribed several medications, but the results were abysmal.

He has since been diagnosed with fibromyalgia, rheumatoid arthritis, and chronic fatigue syndrome. Additionally, due to the intense pain and crippling flares these conditions present, he quickly became addicted to his pain medications, presenting another challenge to overcome.

His chronic pain left him broken in spirit,  and a prisoner in his home. Since he could no longer work or party, his friends disappeared.

I couldn’t help but wonder if this was due to him donating a kidney to me.

There are no definitive answers for us as to whether organ donation caused his illnesses or made his body more susceptible to them. Studies indicate some donors may be more prone to developing ESRD than others but even those results are not conclusive. Lainie Friedman Ross, a physician and professor of bioethics at the University of Chicago says: “The consequences of organ donation might not be apparent for decades — and the risks are not the same for everyone. Young or minority donors have a higher rate of kidney failure than the general population.”

So maybe the sudden onset of his illnesses were brought on by kidney donation, or maybe it was all a coincidence. As Dylan’s mother, though, I couldn’t help but feel guilty either way.

I felt heartbroken watching my son, the person who saved my life, walking around my home barefoot with a cane. He was unable to wear shoes or slippers due to the inflammation in his feet. It was ironic, because thanks to him I could walk and hike for miles again… just not with him, as I longed to do.

So maybe the sudden onset of his illnesses were brought on by kidney donation, or maybe it was all a coincidence. As Dylan’s mother, though, I couldn’t help but feel guilty either way.

As my son suffered, my guilt grew, because the reality was I was feeling better than I had in a long time. So I temporarily moved in with him, helping with every aspect of his daily routine: going to the bathroom, getting himself into his shower chair, helping him dress, get in and out of bed, and so on..

Mary McLaurine and her son, Dylan, who donated a kidney to her 11 years ago.

As a mother, and the person for whom he had (perhaps) sacrificed his health for, all I wanted was to help Dylan get better. But nothing worked entirely, and even when it did work, the side effects added new wrinkles to his suffering. For example, ome steroidal medications helped with his inflammation and pain, but led to sudden mood swings, uncomfortable boating, and persistent nausea.

He knew I blamed myself for his debilitating illnesses, and the guilt was eating me alive. I did my best not to burden him with my self-blame, but it was impossible for him not to notice, at least a little, the tears that would sometimes fill my eyes as I saw him suffer.

How could I not blame myself?

One quiet morning, when he finally noticed my tears, we sat down and talked. He let me off the hook. He told me he never regretted his decision and would do it again tomorrow. But what he said next was profound.

“Mom, I gave you this kidney because I love you, you gave me life, brought me into this world and I wanted to give you that same gift back. We may never know if the transplant is the reason for my chronic illness, but we do know it has given you a new and wonderful life. And that life will be ruined if you keep carrying this guilt with you, because the doctors have told you that stress can injure your already compromised immune system. Don’t let my kidney go to waste. The best thing you can do to help me get well is allowing me to witness you living your life to the fullest! Joy is good for my soul, and yours.”

“We may never know if the transplant is the reason for my chronic illness, but we do know it has given you a new and wonderful life… Don’t let my kidney go to waste.”

I realized he was right. From that moment on, I tried to focus on my gratitude, not my guilt. Some days were still hard, and  I could feel the guilt rise in my throat like a poison trying to escape, but then I would try to recenter myself, remembering that regardless of whether or not giving me his kidney had caused his health woes, I still couldn’t let it go to waste.

And as my attitude changed, it had a positive impact on my son too. We were now linked, he and I, by the kidney that he had given me. In a way, we both shared a body, and as my guilt went into remission, Dylan began responding positively to new medications. His activity levels spiked, and he was able to get off opioids. His arthritic flares have calmed, and we are optimistic things will continue to get better. Changing to a healthier diet, and routinely exercising has allowed him to get out and do routine shopping, outdoor activities, and even socialize with friends.

Watching Dylan’s health spring back has helped further alleviate some of the guilt pangs that surface in me from time to time. And every year, on May 15th, my son and I celebrate our lives, his monumental decision to donate life to me and my unwavering appreciation and gratitude for his generosity and love. We don’t look back anymore. We move ever forward.

He is my hero.

Creative Common photo by Helen Taylor.