I have alopecia areata, an autoimmune condition that causes hair loss. Once again this week, I’ll be wearing my “Ilia” costume at the big San Diego Comic-Con. The character is from 1979’s “Star Trek – The Movie,” and, as played by Persis Khambatta, she became a popular sci-fi icon. When people see me in this costume, they don’t see a woman with cancer, or a masculine-looking female. They see me as “normal” and healthy – more than that, they see me as beautiful and sexy! (I apologize if this sounds boastful, but the character is much-loved and I nailed the costume.)
While wearing this costume at two previous Comic-Cons, I was stopped repeatedly and asked to pose for photos. (Google “Ilia Comic Con” to see many of them). Nice-looking young guys wanted to have their picture taken with me. Countless people told me how awesome I looked. Best of all, no one thought I was sick or unusual because of my bald head! Most people assumed I had shaved – I was asked how long it would take my hair to grow back, and complimented for my commitment to the character for shaving my head! When Comic-Con ended, and I returned to real life as a publicly bald woman, I felt a little sad because I was going back to being perceived as ill or strange by many people.
I hope bald women who feel more comfortable in a wig understand that I completely respect your choice, and I want everyone to do what feels best for them. I’m not anti-wig; they just didn’t work out for me. But, for those of you who are “on the fence” or who have considered going “out” bald for whatever reason, I urge you to give it a try. Take baby steps and you may find, as I did, that it just gets easier and becomes who you are.
I dream of the day when all bald women, myself included, can feel just as normal, unremarkable, and beautiful as I feel in my Ilia costume at Comic-Con. I firmly believe this day will come, but only after there are many more bald women seen in public. The only way that will happen is if we do it.
The Mighty is asking the following: Describe a scene or line from a movie, show, or song that’s stuck with you through your experience with disability, disease or mental illness.Check out ourSubmit a Story page for more about our submission guidelines.
Never underestimate the power of a store display, especially when it promotes inclusivity.
When Meredith Bailey’s daughter Mia was 4, she was diagnosed with alopecia – an autoimmune condition that causes hair loss. This past Christmas, Mia received a bald American Girl doll. Mia loved the doll but wondered why none of the bald dolls were displayed in the American Girl store.
Bailey didn’t have an answer for her daughter. “I wondered, too, why,” Bailey said in an interview with Today Parents. “Why do they have to be special ordered? Why can’t there be just one there? For her, and for all the little girls with alopecia, they deserved to see this doll with all the other ones.”
On Monday, Bailey and Mia went to the American Girl doll store in Natick, Massachusetts, for Bailey’s 8th birthday. Once in the store, they noticed something incredible. Not just one but three displays prominently featured a bald American Girl doll.
“My daughter was ecstatic,” Bailey wrote in a Facebook post on the company’s wall. “These dolls were not hidden in the back and had to be asked for. They were there for all to see, especially for my daughter who wondered why they were not out before.”
American Girl is known for making dolls which promote inclusivity. In addition to their bald dolls, the company sells doll accessories including wheelchairs, EpiPens and a diabetes care kit.
While having all of these items is one thing, prominently displaying them is another.
“This may feel to your company to be ‘no big deal,’ but to little girls who may feel ‘alone’ and so desperately want to see dolls that reflect their beauty — it means more than you know,” Bailey wrote in her Facebook post. “I cried many happy tears yesterday. Thank you so much for including ALL children.”
I have always been a loyal supporter of your company. I still have my Pleasant Company dolls from 1988 that my daughter now enjoys. I was so happy to start my daughter with her own collection. When she was 4 she was diagnosed with alopecia. This past Christmas my she received a doll without hair and nothing has thrilled her more. She did ask at one point why they were not on display at the store. I did not have a good answer to give her. Yesterday, we made our annual birthday celebration with her best friend to the Natick store. On the second floor we hopped off the escalator and there in front of us was a display with doll a without hair! My daughter was ecstatic! Then we saw them in 2 more spots in the store! These dolls were not hidden in the back and had to be asked for. They were there for all to see, especially for my daughter who wondered why they were not out before. This may feel to your company to be “no big deal”, but to little girls who may feel “alone” and so desperately want to see dolls that reflect their beauty—it means more than you know. I cried many happy tears yesterday. Thank you so much for including ALL children. ❤️
I had great hair until my late 40’s. Then the first bald spots appeared, and I learned that I have alopecia areata, an auto-immune disorder where the immune system attacks the hair follicles, causing partial or total hair loss.
For about seven years, I continued to have occasional small bald spots that were always hidden by my thick hair. But in 2007, the condition accelerated and I lost my eyebrows and all the rest of my body hair within a couple of months. I decided to get tattooed eyebrows and eyeliner, which I prefer to applying makeup every day.
I tried wearing wigs, but gave up in less than a year because I found them too hot. I began going out in public bald only a few months after losing my hair. I went from feeling like everyone was staring at me to not caring if they were. It was liberating to not have to worry about people finding out that I’m bald — this is simply who I am now. I’ve found the less concerned I am about my bald head, the less other people seem to notice or react to it.
But, as comfortable as I am being seen bald, I’m frequently reminded I’m not “normal.” At least once a week, someone asks me about “my cancer.” In the middle of a mall, a man will want to talk to me about his wife because I look like she did before she died. I’m approached in restaurants and supermarkets and asked if I’m a “survivor.” Though people mean well, these encounters always make me feel as if I’ve been grabbed by a big rubber band — snapped out of my unconcerned comfort with my appearance and back to awareness that I look “strange.”
Some encounters are worse than simply intrusive — they’re highly unpleasant or disturbing. Once, a man kept staring at me in a waiting room. I usually just ignore this kind of thing, but I was so offended that I looked at him and said, “Yes, I’m bald!”
My worst experience was while traveling in Indonesia. I was standing outside an airport with our bags while my husband went inside for a cart. Because it was extremely hot, I had nothing on my head. A group of stylishly-dressed young women came over and started laughing and pointing at me. Then they came up next to me and posed for selfies. Normally, I’m very quick to assert myself, but I was so taken aback that I simply froze. A crowd gathered, and I started to cry.
I completely support women who prefer to wear wigs, but I hope that someday more women will feel they have a choice to go without one. I also want more people to know that not every bald woman or child they see is bald due to chemotherapy.
To raise public awareness and also to help alopecians (as many of us call ourselves) feel less alone, I created a worldwide event called International Alopecia Day in 2010. On the first Saturday in August every year, people with alopecia around the world have celebrations or events. They send me photos of themselves taken on International Alopecia Day, and I assemble the photos into an annual video. I also run an alopecia support group on Facebook, and do a more light-hearted video series called “The Bald Mannequin Project.” These projects have helped me feel that something positive has come out of my hair loss.
The most amazing thing about my experience is this: Today I am more self-confident and less self-conscious than I was before I became bald. Once I started going out in public bald, I had to become less concerned about what people thought about me. It’s as simple as that.
The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.
My life has been a series of medical struggles. From being diagnosed with breast cancer at age 19, to being deemed legally blind in 2012, I think it’s safe to say I’ve had more than my fair share of health issues.
Despite everything I’ve been through, I continuously try my absolute hardest to be a good mother to my two small daughters, ages 3 and 1.
I want my girls to look up to me.
I want them to be proud of me.
But more than anything else in this world, I pray to God for the ability to teach them the art of perseverance when life presents them with an obstacle.
Sometimes I feel like my cancer is “the gift that keeps on giving.” I’ve been in remission for eight years, but the disease remains a black cloud over my health. Hair loss from chemotherapy is a common occurrence. Survivors know it’s par for the course. As women, we may often feel our femininity is compromised and our outward beauty stolen from us as a result of our treatment. Doctors assure us that hair will grow back, but some of us are not that lucky.
Years after completing chemotherapy, I began to notice my hair was especially thin on the crown of my head. Well-meaning friends and family also pointed out the issue, thinking my visual impairment prevented me from “seeing” what was lacking in the hair department.
Trust me when I tell you, I was painfully aware of the situation.I could feel my naked scalp sting under the teeth of my comb. I became an expert in strategically placing strands of hair in assigned positions in the hopes of creating a fuller effect. I didn’t want to make a big deal about my appearance, especially with two little girls around.
I tried to make the best of it until this week, when clumps of my hair began falling out — breaking for no apparent reason. After seeing my primary doctor, I was advised to see a dermatologist. The doctor examined me for several minutes while my heart pounded out of my chest. Upon completing his inspection, he told me I was suffering from two different kinds of hair diseases, “female pattern baldness” and “post-chemotherapy alopecia.”The combination of these two diagnoses provided a perfect storm for hair loss. Given the fact my hair was already thin, I was basically screwed.
Somewhere in the midst of the doctor’s rather lengthy explanation, I began to hyperventilate. Tears streamed down my face and my ears began to burn. I didn’t just cry, I sobbed uncontrollably.
Why? Why was this happening to me? Haven’t I had enough? Blindness, now baldness.
The dermatologist sat patiently with me, tapping my knee as he spoke and instructing his nurse to bring me some water.Once I calmed down, he explained I was not a candidate for traditional oral treatment due to my previous cancer history. I could, however, try a hair growth cream if I wanted, but that also came with some pretty weighty side effects.
“What about a wig?” I asked.
The doctor agreed that certainly was a viable option. Too weak to walk back to my husband and daughters, the doctor brought me to the parking lot where my family was waiting. As he spoke to my husband outside our car, I tried to wipe tears from my face and turned up the car radio so my 3-year-old wouldn’t hear any part of their conversation.
By the time we arrived back home, I was emotionally drained. I got my children up for their naps and locked myself in my bathroom for a good cry. My husband sat with me, holding me as I balled. “I’m not in love with your hair,” he said. Truthfully, he was the least of my worries. I was more preoccupied with emotional baggage attached to being the bald, blind mother of two little girls.
What was unfair for me was equally unfair for them. They didn’t deserve to have an “ugly” mommy. They already have to cope with a childhood where people question their mother’s ability to parent them because she is disabled. Now they had to deal with my complicated outward appearance as well with my new diagnosis of alopecia.
The next morning, more hair had fallen out. It was obvious things were going to have to be done much faster than my husband and I were expecting. “We have to talk to her,” I said. “What are you going to say?” he asked. Even as a trained psychotherapist, I had absolutely no clue how I was going to explain my hair loss to my 3-year-old. The three of us sat on our bed and my daughter looked at me, wide-eyed.
“Mommy and Daddy want to talk to you about something,” I said. “Mommy went to the doctor yesterday and he told me my hair is sick. That’s why it’s been falling off Mommy’s head. So Mommy is to get a special haircut and then I’m going to get a wig to wear — like in your dress up trunk.”
She sat unfazed. “OK, Mommy. Can I go play now?”
“Sure,” I said. And with that, my toddler scooted off, back to her dinosaurs and princess dolls.
The next day, in the solitude of my bathroom, I shook the remaining hair from my scalp and carefully took a razor to the rest. If I was destined to be bald — then this blind chick was going to have a say in when it was going to happen. Forty minutes later, I looked at my blurry reflection in the mirror. I was still me. I was still there, just with a lot less hair.
My youngest child had no clue what had happened, but appeared to enjoy the tactile sensation of rubbing the back of my scalp. My older girl fearfully gazed at me.
“It’s OK, baby. It’s Mommy.”
“Mommy, I don’t like your new style. You look ugly,” she said.
That’s when my husband stepped in, scooping her up. “This is Mommy’s new hair cut. Her hair was sick, and it didn’t want to stay on her head anymore. Mommy still loves you. Mommy still takes care of you, feeds you, reads to you. And we will love Mommy because Mommy always loves us.”
I could feel the lump lodged in my throat getting bigger. I was trying not to cry.
“OK, Daddy,” she said and ran over and hugged me.
Children are amazing creatures. They can be brutally honest, especially when you’d prefer them not to be. What my little girl said to me hurt me deeply, but I know she is a child and she will adapt to my new diagnosis just as she has to my visual impairment.
Our health is a journey, filled with peaks and valleys. I am stuck in a deep valley now, but I will climb towards that peak with the support of my family behind me.
I will give myself the time I need to feel and process my alopecia diagnosis. If I need to cry, I will. If I need to yell, so be it. Hopefully, my experience will educate others on this disease and help other women to understand they don’t have to be ashamed of hair loss.
My husband and daughters continue to be the root of my existence. Unlike hair, that bond will never be broken.
The Mighty is asking the following: How would you describe your disability, disease or mental illness to a child? If you’ve done this before, tell us about that moment and the child’s reaction.If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
A legacy is something handed down from one generation to the next. When you think of leaving behind a legacy what comes to mind? A business? Money? Property? Or perhaps a name?
What legacy do you intend on leaving behind? How will it affect your children or grandchildren? How will it change the world? Do you have a legacy? Do you worry yourself with such thoughts?
I am currently pregnant with my third child, and my husband and I are already thinking about the next. We decided we wanted a large family. Our first child was diagnosed with Down syndrome at birth and later came to lose all the hair on her body. She has now been diagnosed with a severe form of alopecia.
Alopecia is an autoimmune disease where your immune system perceives your hair follicles as foreign. The body then attacks and kills the hair follicles. My first concern was, could this be threatening to her health?
There are typically no serious health problems related to this condition, which is a relief to any parent. Somehow I was so celebratory in that fact I forgot about any future confidence issues that may arise for her. She is put together perfectly in my eyes. She is a beautiful, happy soul, and up until recently, she rocked her bald head with a fierce attitude. As Airiana grows into more self-awareness, it is becoming harder to ignore whispers and stares.
I listen to people apologize for my daughter on a daily basis. People still apologize even when they find out she does not have cancer. I explain she is healthy and only has alopecia or Down syndrome, yet the response is still, “Oh, I am so sorry.” Is it just me, or do other parents get offended when someone apologizes for your child having special needs?
My husband called me this morning with a heart-wrenching story. He began by telling me how wonderful his morning was with Airiana. He took her on a daddy-daughter breakfast date. Spending quality time with her dad always puts an extra pep in her step. They arrived at school, and he said she happily greeted a group of girls passing in the hall.
He then proceeded to tell me that the girls ignored Airiana, and as they got farther away he heard one whisper, “See, that is the girl with no hair.” He then told me he looked down at Airiana and her shoulders dropped, followed by her head. He saw her peppy step disappear, and she sank into sadness.
These types of situations happen to Airiana weekly. Today crushed my heart more than any other because we just celebrated Ariana’s 10th birthday, and with this birthday has come so much maturity. She is a responsible big sister, a true friend, the best hugger on earth, but now it seems she feels the need to be more.
She has requested a wig this past year, so we are in the process of going through wigs for children. I have watched my fierce, bald little girl turn into a fierce young lady who would like to be a redhead.
I know our story does not end with a wig. The students who are familiar and accepting of Airiana will now have questions about how she suddenly has hair. Curious children will more than likely talk about her wig. Dozens of strangers are still likely to approach us.
Starting today, these interactions will have a different outcome. I plan to make an elementary-level pamphlet. This brochure will be full of information and pictures. I will give them to curious parents so they may share it with their children. I will give them to children so that they may share with their friends. I will offer them to teachers in hopes that they educate their classes.
I also plan to raise money in order to make these pamphlets available to other parents. The idea would be that you could request a number of pamphlets from IAM21 and pass them out if you ever find yourself in this situation. The brochures will not be specific to Down syndrome or alopecia. It will be for the special needs community as a whole. We advocate for everyone.
Schools spend time during the year educating children on drug awareness and pushing them to do fundraisers. Do schools ever take the time to educate children on the diversity of special needs? I would like to see a special needs education week, just as I see a drugs awareness week.
What legacy do I want to leave behind for my kids? Land can be sold and money spent, but you can never take away character. My children and their children will have a profound respect for diversity amongst humanity. I hope to inspire them to hunger for knowledge in the unknown and feed their curiosity by asking questions. I hope my great-grandchildren will know about diversity and how beautiful it makes the world.
Again, I ask: What legacy are you leaving behind for your children?
The Mighty is asking the following: Tell us about a time someone in your community went above and beyond (or did the exact opposite) for you or your loved one with special needs. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
The video below is different. In it, staffer Becky Harris, who appears in a lot of BuzzFeed videos, gives an intimate look at her life with alopecia areata, an autoimmune skin disease that results in the loss of hair.
Harris was diagnosed when she was 17. For a long time, she tried to hide her bald spots with different hairstyles and took cortisone shots to slow her hair loss. In the clip below, she decides to shave her head.
“I wish I had felt this comfortable when I was younger,” she says after the cut, “but sometimes when you don’t know what other people are going through, it can be tough to be OK with it.”