7 People Describe What It’s Really Like to Have Alopecia
Let’s get some things straight right off the bat: Alopecia is not a sign of cancer or that someone is going through chemotherapy. Not everyone who has alopecia loses all their hair. And, of course, it’s not something anyone needs to be ashamed of. Unfortunately, far too many people with alopecia have been subject to misinformation and harmful assumptions, leaving them feeling insecure. So let’s get to the facts.
There are several kinds of alopecia and they all include some level of hair loss. As SELF wrote previously, there are three main types of alopecia areata: There’s patchy alopecia (which causes patchy hair loss), which can progress into alopecia totalis (which causes total hair loss on the scalp) and alopecia unversalis (which causes total hair loss all over the body).
Alopecia areata is thought to be an autoimmune condition in which the body’s immune system mistakenly attacks the hair follicles, and research suggests that both genetics and environmental factors play a role in developing it. But the exact cause isn’t well understood.
Treatment and recovery often depends on the severity of your alopecia. For instance, people with mild patchy hair loss may see it regrow within a few months without any treatment. If it’s more widespread, though, your doctor may recommend steroid injections or topical medications. Although some people with even more severe symptoms may see hair regrowth eventually, there’s currently no cure for alopecia. That means that finding a specialist well versed in managing your symptoms is crucial.
Below, we talked to a few women about their experience with alopecia, what they wish more people knew about it, and how having the condition has affected their relationship with their body.
1. “Who knew you could contour your skull?!” —Joyce
“I was officially given a diagnosis by a dermatologist on February 1, 2018. However, I first noticed a bald spot in May 2017, while I was traveling in South America. My couple months traveling between Ecuador, Peru, Bolivia, and Chile are ingrained with memories of my coming to terms of what I now know as alopecia universalis.
“Subconsciously, I think I was putting off the dermatologist appointment to avoid what I knew I was going to be told: I have alopecia universalis and there isn’t anything we know about it or anything we can do about it. Coming to terms with the fact that my 20-inch-long, strawberry blonde hair would most likely never come back was and is hard. It’s something that hits me every now and again.
“However, officially getting a diagnosis was ultimately grounding. Shortly after this initial reaction, I was able to find an acceptance of myself deeper than my surface level smile and attitude about the process. There is something beautiful about recognizing the person you were meant to be, and the insignificance of things some put so much significance in.
“When I was coming to terms with my alopecia, the resources I found were directed toward women seeking to be beautiful with hair loss through a wig. While that is an important option and valid for some, I was extremely disheartened. Societal standards of beauty are incredibly off base in many ways, and the significance of hair is one of those ways.
“I shaved my head in August 2017, and let me tell you, it was liberating! The process of losing hair was emotional and tears were shed, but when I stopped covering up the bald spots and started rocking the bald, a weight had been lifted off my shoulder (literally and figuratively). I have had many strangers come up to me thanking me for my strength to boldly be bald when they could not. Again, there is no right way—as long as the way you go is because you have chosen that way. My beauty tip: do whatever the hell you want.
“As I continue to learn about the connection between autoimmune health and overall health and wellness care, I have mobilized to prioritize my own health and wellness in ways I never had. I have completely transformed my eating habits and nutrition, exercise routine and frequency, incorporation of personal passions and activities, among other mindful and interpersonal parts of my life. This is all ironic because people assume I am tragically sick, when in fact I am the healthiest I have been in a long time.
“I get cold much easier, and have to be extra protective of my skin (I already had vitiligo, autoimmune diseases like to stick together). Something to think about is the implications of losing your nose and ear hair—the New York winter was not kind to me. In a practical sense, I wear winter hats in places that otherwise wouldn’t be appropriate, put sunscreen on my head every morning, and carry tissues with me constantly. On the rare day I decide to wear makeup, learning to adjust that routine has been fun—who knew you could contour your skull?!
“I am a cis, hetero, able, Protestant, white woman who holds a lot of privilege, and the hardest part for me overall is acknowledging the privilege I hold, while also allowing myself to grieve and allow sadness. I have it easy, really. I made it to 22 with a head full of Rapunzel hair. I had hair through middle school. The people who knew me with hair seem to only talk to one another about me no longer having hair. Everyone asks about pubic hair! A colleague told me it was good I landed my job before I lost my hair or I wouldn’t have been hired. When I am in public, you wouldn’t believe some of the things people say. Some days are hard. But overall, I have it easy.
“I wish more people knew alopecia existed! Also, there are double standards amongst genders as to what hair loss means, but I think an important takeaway from that is that hair loss does not necessarily mean someone is sick. Personally, I am open about talking about alopecia and what it is, but not everyone is. I would much prefer to field questions than have someone come up to me with a blanket, ‘Something is obviously wrong with you. Please know I’ll be praying for you,’ statement.”
2. “You never realize how important eyelashes are until you lose them.” — Brittany
“At the age of 10, I had one bald patch that came and disappeared. I didn’t think anything of it until age 12, when my hair started coming out again, but that time it was falling out in clumps. As a child you don’t understand why you are going bald; I hid it from my parents because I thought I had cancer and I didn’t want to worry them.
“After losing a good percentage of my blondie locks my mom realized I was losing my hair and something wasn’t right. I was brought to the pediatrician by my mom. The pediatrician examined my scalp, said this is probably a case of alopecia areata, and referred me to the dermatologist. After meeting with the dermatologist, I was given an official diagnosis of alopecia areata. We started treatment immediately, which was topical ointments and injections into my scalp.
“After finding out my diagnosis, I became depressed. Losing my hair and being in junior high school wasn’t easy—I was a huge target for bullying. My hair loss became so severe I had to begin wearing a hairpiece, which my fellow classmates pulled off of my head on a couple occasions. There were also rumors going around that I had cancer. The bullying that I experienced caused me to be self-conscious of my appearance and insecure. I was frustrated as well because none of my treatments were working, and the injections were giving me major headaches.
“Eventually, alopecia caused me to have complete hair loss on my scalp, loss of eyebrows and eyelashes, and complete loss of all body hair. A side effect of having alopecia is also ridges and brittleness in both fingernails and toenails.
“Every morning I wake up, pencil in my eyebrows, and apply false eyelashes. You never realize how important eyelashes are until you lose them; airborne particles can be a pain. After applying my makeup, my last step in getting ready is applying my wig. Then I am set to conquer the day. The hardest parts of having alopecia areata are finding wigs that are stylish yet affordable, dealing with the heat in the summer (it causes your wig to itch and your eyebrows to sweat off your face), knowing that your children could also inherit your alopecia, and being prone to other autoimmune diseases.
“I dealt with years of depression until I attended my first National Alopecia Areata Foundation (NAAF) conference at the age of 16; I realized after attending the conference that I am not alone with this disease. There are thousands of others also facing this disease, and meeting others with alopecia areata helped me to finally accept what was happening to my body. I became a support group leader for alopecia areata because I know this diagnosis can be difficult to handle sometimes. I host an annual event at my local minor league baseball team stadium for alopecia areata awareness.
“A diagnosis of alopecia areata is not the end of the world. If you are struggling with this diagnosis, please know you are not the only one. ♡ Find a local support group meeting or find support at naaf.org.”
3. “I began wearing wigs at the age of 9.” —Ebony
“I was diagnosed in 1995, at the age of 4 (going on 5). I do not remember much, however my mother discovered patches of missing hair that began forming as she was combing my hair at home. She called my doctor and explained what was happening. After getting tests done, the results showed that I have alopecia areata, which later turned into alopecia universalis.
“Things didn’t really affect me until transitioning to grade school. At the beginning of my 2nd grade school year, my hair fell out, causing me to wear hats to school. This stirred up issues of bullying, leaving me feeling insecure and self-conscious.
“Outside of talking to family, I [deal with my alopecia by trying to live] a better, healthier lifestyle. Although there is no cure (yet), I do my best to add more nutrients to my body and take supplements that will benefit my immune system.
“The hardest part of having alopecia is wearing wigs and finding ones that are stylish, yet affordable. I began wearing wigs at the age of 9, when my hair fell out for the final time. My mom made my very first headband wig. Together, my mother and I have spent thousands of dollars on hairpieces just so I could look presentable.
“I wish more people knew that it is not cancer-related, nor a life-threatening disease. It is strictly hair loss.
“Today I am a legislative liaison for NAAF representing Michigan. I have traveled to Washington, D.C., and I’m currently working to help pass a bill that will benefit hair loss patients. I am also a YouTuber, pageant girl, and a self-taught makeup artist!”
4. “Hair is just an accessory, not a standard of beauty.” —Anamarie
“I was officially diagnosed with alopecia in November 2016. I saw two doctors and then requested a dermatologist who ordered a scalp biopsy. The biopsy results ruled out lupus, and I was confirmed to have alopecia with diffuse hair loss.
“After my diagnosis, I felt devastated and relieved all at the same time. I was relieved to finally have a straight answer from a medical professional after months of back and forth, but I was devastated with the news and thought I would never be able to recover or feel beautiful ever again.
“The major symptoms I have experienced are the cyclical hair loss that came with an emotional toll. I was constantly hopeful then depressed every time my hair started growing back and then falling out again. I felt sorry for myself and had low self-confidence.
“I researched everything on how to live and cope with alopecia via the internet, blogs, social media, YouTube, etc. I tried using makeup to cover my bald spots, and then a wig, but I never felt comfortable. I eventually reached a point of exhaustion and decided it was better to embrace my alopecia and shave the rest of my hair off in March 2017. I began to gain my confidence back after admiring all the women who share their alopecia with the world, realizing I too, can be one of them and that I have so many things to be grateful for.
“The hardest part of living with alopecia is the lack of awareness and ignorance from other people. Ignorant comments can be very hurtful for someone newly diagnosed. I wish that people could take the time to respectfully learn and understand what alopecia is, and to realize that hair is just an accessory, not a standard of beauty.
“I recently celebrated my one-year baldiversary at a rooftop in downtown L.A., with family and friends last month. I had an amazing time celebrating being bald, bold, and beautiful. I hope that as our society continues to progress, we can change the standards of beauty together and learn to embrace all qualities and characteristics that make each of us unique.”
5. “I’m not sick, I’m just bald. I’d rather you not jump to conclusions.” —Dorothy
“When I first diagnosed with areata, my doctor attributed it to stress. I had just lost my mother a couple years before to breast cancer. Fear sets in. Breast cancer runs through my family like a deep root within our family tree. That was the first year I had a mammogram. I was 11; it was all clear. I was about to start high school and was afraid of the teasing that would ensue.
“I stopped all perms and relaxers because I thought that could have contributed to me losing my hair. How could I not be a teenage girl who just lost her mother a few years prior and not stress about losing my hair!?! I found cunning ways to cover it up. By the time I graduated high school, I went between burning my hair with flat irons that couldn’t handle the texture of my hair and eventually gave up and went all natural with the occasional dye job. While my friends thought I was just being cool going natural, my bald spots were getting larger and harder to hide.
“One day, I woke up and the spots became oil spills pooling over my scalp. They were becoming harder to cover. I eventually decided to shave my head with the encouragement from friends. I wore a beanie for a few weeks. Shortly after, my best friend went with me to purchase a wig we affectionately named ‘Yonce.
“I had hope my hair would grow back, it didn’t. I was diagnosed with totalis at 24. I went on a two-week sabbatical to New York, embraced ‘Yonce the wig, and continued about my life.
“[After] my flight back home, I started noticing loss of hair elsewhere (eyelashes, eyebrows, nose, ear, etc.). Being diagnosed with universalis at 26 was the next step. I’ve gone through these past six years with kohl eyeliner and bright red lipstick as my go-to without fail. I occasionally grow back wispy hairs and eyelashes here and there.
“My major symptom is hair loss, including my scalp, eyelashes, eyebrows, ear hair, nose hair, and body hair. The occasional sinus or ear infection plagues you. I deal with it by keeping my skin well moisturized and I trim the occasional errant hair. Exfoliating is also part of my weekly regimen.
“The hardest part of having alopecia is allergies. Living in Texas, nothing is consistent. Not having nose hair or eyelashes to filter out the big bad allergens or dust definitely wrecks havoc on your daily life. I try to stay on top of my allergy forecast. You never know!
“Sometimes the looks and whispers can be embarrassing and make sad. But above all, I know who I am. My baldness doesn’t define me, it’s a part of me and it’s not worth being hidden. I’m not sick, I’m just bald. I rather you not jump to conclusions. Please ask me before assuming.”
6. “I went from having no spots to no hair in 72 hours.” —Brooke
“About three years ago I was diagnosed, when I went from having no spots to no hair in 72 hours. I was in nursing school and had been losing a lot of hair in the shower. But I had thick hair so it wasn’t too big of a deal. One day while pulling my hair up into a bun, I noticed a bald spot.
“It immediately freaked me out so I called my mom. I figured it wasn’t too big of a deal but made an appointment with the doctor for the following week. One spot became two. Two became half my head. And within three days I was bald. They did several scalp biopsies and took a shocking amount of blood. They told me I had alopecia areata. They said I was born with an autoimmune disease, and as a result my body attacks itself. One of the symptoms is alopecia.
“I felt devastated, shocked, angry, heartbroken, ugly, masculine, and hopeless.
“Now, my most obvious symptom is that I lose huge patches of hair all over my head, and my eyebrows. I get regrowth that continues to come and go, so I shave my head. I also have extreme pains all over my body, some similar to charley horses and some similar to feeling very sore and achey. I have major scalp tenderness that can sometimes cause my head to become raw and bleed. I also get sick very easily, very often and have a hard time getting rid of it. I catch pretty much every illness. I also experience chronic fatigue on a daily basis. That’s not including the obvious ways it affects me, as a young woman, emotionally. Or the ways it affects my social, personal, and professional life.
“To deal with it, I take my vitamins, drink water, wash my hands and share sanitizer often, stay active, try to eat right, stay active in the community, journal a lot, and most importantly, stay positive!
“The hardest part of having alopecia is the emotional rollercoaster. If [my hair] would fall out and never come back, I could adjust. But it comes and goes in such [an erratic way] that it can be very emotionally draining to get your hopes up, only for it to fall back out. People’s reactions or comments are also one of the hardest parts.
“For someone who loves an alopecian, that empathy and kindness goes a long way in supporting us. If you don’t get what we’re going through, that’s okay. Just be kind and practice patience. Also, imagining how you might feel living your daily life in their shoes might help. As someone with alopecia, getting involved in the online community was vital to me being ‘out’ and living my life with alopecia. Those Facebook groups made it so much easier! The alopecia family is one unlike any other.”
7. “Alopecia is as much—if not more—a mental struggle than a physical one.” —Allyson
“I was diagnosed when I was 15 and a sophomore in high school. I remember it was November and I had a small patch of hair missing towards the back upper section of my head. I remember being scared and my dad saying that after the holidays we would see someone to find out what was happening. I told him that I wasn’t going to be able to enjoy the holidays if I didn’t know what it was.
“I felt confused, scared, but also somehow distanced from the condition. For years I didn’t want to learn more about alopecia because I didn’t want to go down that rabbit hole of information. So for years it was always just something I dealt with [as needed without addressing the underlying issue]. Until my condition got much worse when I was in graduate school, I tried to put the alopecia out of my mind as much as possible.
“[To manage my alopecia], I get injections in my scalp once a month, use Latisse on my eyelids, Rogaine on my scalp in between injection appointments, acupuncture to help with blood flow, light therapy, supplements and vitamins, practice yoga, eat a specific diet, try to get as much vitamin D as possible, and see a therapist.
“The hardest part is the unpredictability of it all. Is today the day I go bald and never have hair again? Is it all coming back tomorrow? Are my eyelashes gone for good? No one can answer these questions, and there are no medications specifically for alopecia.
“Alopecia is as much—if not more—a mental struggle than a physical one. Without the support of my family, friends, and doctors, I’m not sure how anyone tries to tackle such an unpredictable condition.”
Responses have been edited for length and clarity.