In the summer of 2016, in the middle of a long hospital stay, I took my first shower in a week. Sitting on a plastic bench because I was too weak to stand, I let out a blissful sigh as the warm water washed over me, the air filled with the flowery scent of the hospital shampoo. Awash in gratitude, I rubbed my scalp carefully, mindful of the IV port on my arm and its protective clear plastic tape.
As I rinsed the shampoo out of my hair, I noticed a heavy sensation moving across my shoulder and looked down. A thick rope of hair had slithered off me. Now it lay puddled on the shower floor, sitting plumply atop the drain like a large, wet rodent.
I shuddered. Already, I’d been absorbing the shock of seeing myself in the bathroom mirror just before my shower. I hadn’t seen myself naked in a week. Briefly standing in front of the mirror as I’d removed my white hospital gown, I had gasped at the sight of my body.
I was here because of two dangerous gut afflictions that had caused terrifying weight loss. My ulcerative colitis, an autoimmune disease I’d had for two years, had flared up months ago and sent me to the bathroom once an hour with severe diarrhea. Then I’d developed a C. diff infection that compounded my symptoms and gave me bouts of agonizing abdominal pain.
I’d gone from 122 down to 88 pounds. At five-foot-nine, I was skeletal. Each time I stood to use the bathroom, I had to use my hands to scoot my legs off the side of the hospital bed, because my legs were too weak to scoot by themselves. I was so skinny I could wrap my thumb and middle finger all the way around the upper part of my arm.
We had finally found the right meds this week, and thankfully, my weight had begun to inch back upward in the last few days. Now I was strong enough to shower again. It was wonderful—but seeing my hair on the floor reminded me just how sick I still was.
In the days after that shower, I constantly picked tendrils of dry hair off my shoulders, as though this was some strange new hobby I’d discovered in the hospital. I formed the hair into discreet little balls that I threw in the trash whenever I stood.
Once, a doctor’s eyes drifted to my elbow and rested on my latest ball of hair.
“Sorry; this is gross,” I said.
She shook her head in admonishment.
My weight continued ticking upward; I was sent home to begin my long recovery. But my hair still kept falling out, as though all the strands had voted to abandon ship and were now jumping overboard one by one.
I wasn’t sure what was causing this. My best guess was meds. The C. diff was gone and I had started on an immunosuppressant, Remicade, for my colitis. Even though hair loss isn’t listed as one of Remicade’s side effects, I thought this new drug must be the culprit. It seemed to be the main thing that had changed over the summer.
I’d read online accounts of other slender, ginger-haired women like me who had lost their hair when they took Remicade, and I wondered if there was something the science had missed. If I was right, then my hair might never grow back, since I would be on the drug indefinitely.
I fretted that bald patches would appear. I asked my husband Ron to tell me if he noticed any, and at first, he assured me he hadn’t.
But one day, after I’d been out of the hospital for a month, he confessed that he had. We’d just been walking through a grocery store, and he was startled to see a bald patch as he walked behind me. He said it had made his heart ache for me.
I cringed. I imagined myself to look like the witch on Robin Hood: Prince of Thieves, with stringy, sparse hair sticking out from my skull over a pale, rickety body.
I forget about it most of the time, I wrote one day in my journal. It comes into awareness when I look in the mirror, or when I’m in public, or occasionally if I tilt my head down in Ron’s presence. I don’t feel exactly humiliated, but rather worried that my scalp’s visibility will be distracting. With friends, I worry about burdening them with this—I’m actually way better, now, than I was 2 months ago when I had most of my hair.
That was the confusing thing. Although I felt self-conscious, I didn’t care about my hair loss nearly as much as I cared about other symptoms.
My abdominal pain was finally subsiding, and I felt infinitely better than I had for months. I was regaining the strength to walk uphill, drive, and work on the computer, and through it all I reveled in my own lack of pain. After months of constant pain, the absence of pain felt like being in heaven.
“If I had to choose between being bald but healthy for the rest of my life, and having hair but being sick, I’d choose baldness in a heartbeat,” I told Ron. He looked surprised. To me, there was no comparison.
There was even something bizarrely comforting about going bald. It was evidence, visible evidence, of how very sick I’d become. Invisible illness is a double-edged sword: you can choose who sees your illness and who doesn’t, but you’re not sure everyone believes you’re sick.
My baldness was evidence that my illness was real. That all my diligent self-care—my restricted diet that inconvenienced my friends, my need for rest that made me say “no” to so many invitations—was necessary.
Look! I wanted to say to some imagined naysayer. See? I have a real, life-threatening illness. It made me so sick my hair fell out.
I lost most of my hair in the fall. I kept the rest long, because at first, through elaborate arrangements with bobby pins, I could fake the appearance of having more hair. But eventually, my artful comb-overs couldn’t disguise my baldness.
I went wig shopping alone. Ron and my family couldn’t come on the Saturday I went, but I wanted the wig before my first day back in the office, which would be next week.
I worried that buying a wig alone would be depressing. I steeled myself as I parked in front of the wig store.
The place was empty except for a young, serious man of Asian descent who was talking with a middle-aged black woman as he rang up her wig. Excited to encounter another person who needed a wig—I was always on the lookout for other ill people—I peered surreptitiously at the woman’s head. From where I stood behind her, she looked robust and healthy, not sick at all.
As I eavesdropped on their conversation, it dawned on me that she was a regular customer and wanted the wig for variety and style, not need. Also, she was already wearing a wig. It suited her so well that I hadn’t noticed her hair was fake.
She was pretty, and her wig’s hair was black and straight and coiffed with stylish bangs that framed her face nicely. I wondered how many people I’d seen in wigs without realizing it. This world was completely new to me.
After she left, the young man and I were alone in the store. Was he wearing a wig, too? I doubted it—but suddenly I doubted my own perceptions. Would I be able to tell?
I tried to summon confidence as I stated that I was losing my hair to illness. Nonplussed, he amiably explained wig basics to me. Natural hair is much more expensive, he said—into the thousands of dollars per wig. I gasped.
But decent, fake-hair wigs go for just a few hundred, he assured me. I gulped. I’d had no idea how expensive wigs were, even fake-hair ones.
Once I bought my wig, he said, even if it was fake, I’d need to care for it much like caring for my own hair. It would need to be gently washed by hand every few days then hung to dry. I could brush it and shape it like hair, but should probably not pull it back in a ponytail, which could expose the seam that would wrap around my head.
I nodded. My hairstyle would have to change for the first time since adolescence. From ninth grade on, I had always treated my hair as an afterthought, pulling it back in a ponytail or a bun.
I wanted a wig that resembled my natural hair. The young man brought out binders of fake-hair samples, eyeing my hair and pointing to samples that were close to my color. I thought of my hair as light brown or strawberry blonde, but the samples he chose were darker than I’d expected. With his expert eye, he’d determined my hair to be a darkish brown with red and blond highlights.
He gave me a small nylon cap in which to tuck my real hair, or what was left of it. I shyly took off my baseball cap and put the nylon cap on.
Then he brought out several wigs for me to try. He helped me don the first one, grasping the front and fitting it over my forehead then having me bow forward while he carefully shaped the edges around the back of my head. Finally, I flipped my head upright again and we straightened out the hair. I caught a glimpse of myself in the mirror and broke into a grin.
What magic! This first wig looked natural, yet also changed how I looked. Its hair had some wave, like mine, but less frizz than mine. It was better-behaved than my own hair. I liked the way it made me look!
I was astonished at the way a head of full, thick hair made me suddenly look much healthier.
The young man smiled at my exclamations. He went to help another customer, a second black woman who had just walked in. I snapped pictures of myself in the mirror and texted them to my family; they texted back approval.
I swapped the wig out for an identical one in a blonder color and texted another picture.
This was actually fun!
Someone texted back suggesting I try bangs. I’d never worn bangs, because my frizzy hair just flew in all directions if I cut it short around my face. I found several wigs with bangs. To my amazement, a pixie cut made me into the spitting image of my mom and sister, who both wore that same cut. I hadn’t realized how alike we all looked, and how it was mostly my hair that made me look different from them.
And I loved how I looked and felt in bangs, which hid my high forehead, softened my long face, and made me feel slightly protected, like I was peering out at the world from under a hoodie.
I felt like a debutante trying on dresses. Each time I pulled off a wig, nestled it into its box, and put on another, I grinned at my changed appearance in the mirror.
Across the store, three white teenage boys wandered in. They began making their way in my direction, snickering to each other about different wigs. They seemed to think no one had noticed them.
The shop was busier now, and the young proprietor was across the room helping an adult, but I sensed his irritation with these boys. They were obviously just here to try wigs on for fun, not to buy anything.
One boy donned a set of long, luxurious black locks that fell down to his waistline. The other boys laughed.
They reached the corner where I sat in front of my mirror. I lifted my chin and decided to ignore them. I took off my latest wig and exposed my delicate, stocking-capped head, rummaging in my stack of boxes. Without a wig on my head, I looked more sickly and pale.
The boys quieted down and moved on.
In the end, I chose a cut that was dramatically different from my own hair. If I had to have a wig, why not take advantage of the opportunity?
This wig’s hair was straight and not frizzy, allowing it to fall in a well-behaved bob that ended just below my chin. It had bangs. The store was out of this style in my natural color, so I went with a somewhat blonder shade that still looked more or less natural against my skin.
The shopkeeper and I were alone again by the time he boxed up my wig for me. I’d been here over an hour.
He called the wig “her” and “she” as he advised me on cleaning. “You’ll need to wash her a couple times a week if you’re wearing her every day. At night, unless she’s wet, you can just store her in her box.”
I walked out into the sunlight feeling elated.
Wearing a wig made me see the world differently. Around town, I began to notice a peculiar feeling that arose from small interactions.
Little moments would catch my attention. In a grocery store aisle, a man looked at me longer than I expected him to. Walking down the street, a young couple smiled at me with a certain glimmer that took me by surprise.
I would notice these small exchanges and not understand why they felt odd. Why was I noticing people notice me?
Gradually, I understood what was happening. The wig made me look different, and because I looked different, people were interacting with me differently from how I was used to.
My natural, frizzy hair had made me look earthier than this wig. Now, with straight, blondish hair, Ilooked preppy and conventional, and perhaps more conventionally attractive.
I couldn’t always be certain these many little moments were happening because of my wig. Maybe I was acting differently, not just looking different? But they happened enough times that they accumulated into a certainty that at least some of the time, people were treating me differently.
I’d heard transgender men report being given more respect when they transitioned from a female to a male appearance, and I’d heard the story of a woman who became thin and felt herself to have entered a secret club for skinny people. Now I was being treated differently because of my own appearance, and although my transformation had been more subtle than theirs, I felt their same indignation.
Was my natural hair not good enough? If I’d been born just slightly differently, with the genes for straighter, more well-behaved hair, would I have had a few more opportunities in life? Were we all really going around judging each other on such superficial details?
I felt grateful for my wig, but recognizing that people were treating me differently made all my interactions feel somewhat cheapened. How might I have been treated all my life if I’d been bald this whole time, I wondered, or fat, or scarred, or dazzlingly beautiful, or a different race?
Sometimes people I knew complimented “my new haircut,” and I always thanked them then explained that it was a wig. I wanted them to know that this wasn’t real, that the real me had a chronic illness and was bald.
The wig was itchy. Whenever I arrived home from work, the first thing I did was take it off. I never wore it when I was around only Ron or my family.
In January, five months out of the hospital, I discovered I could no longer see any bald patches on my scalp. A little brown fuzz was filling them in. My bobby pins were enough to disguise my head again without the itchy wig. Grateful to be rid of it, I put it permanently away.
I was still taking Remicade, so I realized I’d been wrong about the drug.
That same month, I read a passage in Olive Kitteridge about anorexia.
“I don’t want to be like this,” the girl whispered.
“Of course you don’t,” said Olive. “And we’re going to get you help.”
The girl shook her head. “They’ve tried. I just keep getting sick again. It’s hopeless.”
Olive reached and pulled over a chair, so that she could sit with the girl’s head on her big lap. She stroked the girl’s hair, and held a few pieces in her fingers, giving Daisy Harmon a meaningful nod before flicking the hair to the floor. You lost your hair when you starved.
I stared at this passage. I read it over again a few times. With a sinking, prickly feeling, I knew that this was what had really happened to my body the previous summer.
I had starved. My hair loss wasn’t from meds. It was from being so sick I had almost died.
Over the following several months, the downy fuzz grew into a thick, satisfying mullet beneath my witch-like strands of remaining long hair. I kept it all tied up in my improvised, bobby-pinned style. At night I took it down before bed and periodically documented its changes or cut the longer hairs.
February. 
My remaining long hair. 
Time for a cut. 
Gorgeous! 
June.
By June, I felt I’d grown enough hair to merit a salon cut, my first in years. I made an appointment with a local, natural-products salon and told my hairdresser, Irene, my story.
“Ready?” I said after finishing my tale, removing the bobby pins and pulling my mullet down around my neck. Irene smiled and caressed my head, running her fingers through my newborn, downy hair. Then she washed it and set to work.
I had never liked my hair. Its frizz made it unmanageable without a lot of hairspray, oil, or blow-drying, and I wasn’t willing to do any of that. I had always resigned myself to ponytails and never paid heed to advice from stylists when I occasionally went to them.
But now I listened closely as Irene talked about my hair. I had a newfound respect for the beauty industry after realizing how much my appearance affected the way people interacted with me.
Irene explained that I had curl, not just frizz. Curl was a good thing. I should refrain from brushing because of the frizz, just gently scrunch my curls when I towel dried, and perhaps wet and scrunch again in the mornings.
At first, I didn’t love my new hair. I knew I was lucky to have hair again at all, but it was shorter than it had been since I was little, and I didn’t feel like myself in it. “I look like Raggedy Anne,” I lamented to Ron and my mom.
But Ron liked it and Mom loved it; every time she saw me, she cooed and caressed it and exclaimed, “It’s so curly!”
3 months after haircut. 
4 months after haircut. 
10 months after haircut. 
On bad days, I still wore it up.
“Has your hair always been this curly?” I was asked over and over. I wasn’t sure. Sometimes I thought my new meds were making it curlier, or that my hormones had changed with my illness in the way they often do after chemo.
Soon I began to like my new hair, too. And as it grew longer, to my surprise, I even began to love it—the longer it became, the more glamorous my curls felt.
Three years after I went bald, I was receiving constant compliments on my hair, always from women. “Is your hair naturally that curly?” they would ask with envy.
Once, in a parking lot, I took my hair out of its clip in order to pull it up better when a woman called to me from a car window: “You should keep your hair down! Your curls are so amazing!” Her friend agreed from the driver’s seat.
“Thank you!” I called back, blushing.
I always met these exchanges with deep gratitude. On days when I felt full and whole and healthy, my hair seemed to fit who I was, perhaps even better than it ever had before.
But the compliments often gave me pause as well. I wasn’t always healthy and vigorous. My Remicade was keeping me in remission, but I still had a high-maintenance body. Every eight weeks I sat for two hours with an IV in my arm for an infusion of the med. I got frequent blood draws to monitor my liver; I ate a very careful, very restricted diet; I needed lots of rest.
It was confusing to be an ill person who looked and often felt well. But I was still an ill person; my illness had just become invisible again.
One day, my gastroenterologist told me I could go off a second immunosuppressor I’d been taking along with Remicade: Imuran. I rarely thought about this med. Remicade was the drug that had brought me into remission, while Imuran was just an adjunct. I took it in pill form every morning, and because it was an innocuous little pill and not an infusion, I thought of it as insignificant.
But as the months passed and the Imuran left my system, I realized that was wrong. Imuran was the reason I’d been having my liver checked, I learned. Its effects on the system can be quite serious.
And now my hair was changing again—the curls were relaxing. It turned out my natural hair was indeed wavy, not curly. Imuran had quietly given me a perm.
Looking back now, I treasure the memory of the months when my hair was gone. In a way, during those months, I felt like I was the most authentic version of myself that I’ve ever been. I think of my delicate, exposed scalp with tenderness, and I’m comforted to know it’s still there—but just hidden, like my illness.
And I also treasure the memory of my curls. Now that they’ve faded, I understand that like my baldness, they expressed other authentic parts of me—my health and exuberance, my sensuality, my joie de vivre. It felt wonderful to show those parts to the world with such ease.
I now understand why so many people put great effort into their appearance. If I bothered to use a curling iron or get a perm, I might regain the fabulousness I had for two years with my curls, when I felt beautiful and like myself. That feeling is worth a lot.
But mostly, now my hair is back to its old, tamer waves. And I mostly wear them up, once again an afterthought.
Such a wonderfully written story! One that I’m sure will ring true with a lot of people. On a personal note, I always love reading what you have to say. Through your writing you open up a whole world of interest, perspective, and compassion for those that may feel unseen. Thank you!