About a month ago, a press agency reached out to me requesting to write an article about me and my struggle to overcome alopecia. She conducted an interview via email. I was excited by the opportunity to share my story and potentially inspire other people struggling with alopecia or with other insecurities. Learning to overcome my insecurities regarding alopecia was incredibly powerful for me and I only wish I had confronted it sooner.
I was so excited when I heard that the article was published and rushed to check it out, only to discover that the version posted on the Mirror was not what I had expected. Despite the fact that I had intentionally chosen not to focus too much on my dating life in the interview, the editor of the article must have decided that that's what people really wanted to read about. The title alone really served to diminish my story:
"Boyfriend's touching reaction after girlfriend of 6 months tells him she's bald"
I understand that these "news" outlets rely heavily on clickbait. But I was still disappointed to see that even the title focuses NOT on any of the empowering moments from my story, but on my ex-boyfriend's reaction to discovering that I had alopecia. This takes the focus from what was an extremely powerful moment for me (opening up about something I had been really insecure about), to his reaction. Which, mind you, the article only briefly mentions in a short quote:
""I had enough of the secret and made a Facebook post announcing that I had alopecia and that was how my boyfriend at the time found out. I was afraid of how he'd react the next time I saw him, but he told me it was cool that I opened up."
"He told me it was cool." Tell me again how that became the click-baity headline? If he had reacted negatively, I would have realized he was a jerk and moved on. Sure, I might have been a little sad about it, but I was not at the mercy of his opinions. My decision to open up about alopecia had little to do with him, or his reaction.
Not to mention, the guy mentioned in the story was not yet my boyfriend at the time that he found out. (Which means they also altered the quote above, because I wouldn't have referred to him as "my boyfriend" in that context). I know it seems like a minor detail, but even that is a pretty big change, because I had intentionally told him before we became official, because in my mind, I didn't want to officially start dating someone that I didn't feel I could open up to.
My "coming out" about having alopecia was not about any specific person. It was about wanting to work on my own confidence, and to get it out into the open in a way that would stop me from ever getting too scared and turning back: by posting it on a public platform and telling as many people as possible.
I want to clarify that I'm not mad at the writer of this article. She only wrote what she thought would get published- probably with guidance from her editor and publisher. I wouldn't be surprised if the changes made were out of her hands.
I was also relieved to discover a few days after finding The Mirror article that there was another, different version of the article posted on The Sun. The headline is still click bait of course, but I feel that this article tells my story in a much more empowering way.
WIG OUT
Woman who hid her alopecia from her boyfriend by sleeping in wigs for six months finally revealed her bald head on Facebook after getting sick of ‘keeping it a secret’
(Again, still focuses on my love life, but at least the story itself is much better here..!)
I have a lot to say about this article and will be posting a YouTube video about it soon. In the meantime, I wanted to share with you the entire interview so you can learn more details about the actual story in my own words, and see just how little I discussed my love life at all.
Here is the interview:
First, she asked me to send her an overview of my story, so here are the highlights from that:
I developed alopecia when I was around 2 or 3 years old. Alopecia is an autoimmune disease where your body essentially attacks your hair, causing it to fall out. There are a lot of different types of alopecia. Some are genetic, but mine was not. No one in my family tree had had alopecia.
(Skipping a lot of parts here because I go over that in the interview!)
As I got older, I knew that I really WANTED to stop treating it like a secret. I wanted to get to a place where I could switch up my wigs on a regular basis but the thought also terrified me, and it felt like I could never do it. For a long time, even saying the word "alopecia" triggered an emotional response in me, so even if I wanted to tell someone new about it, I had a hard time doing it without my voice shaking. It just became so much easier to avoid the subject.
When I was about to go away to college at age 18, I made it a goal to start being more open about the fact I wore wigs in college. But when I actually started college in the fall and started making friends, because of the fact no one knew me from before and had no idea I wore wigs, it was so much easier to just let them believe that it was my real hair. The idea of finally getting to feel "normal" (in a way I never could in high school) was too alluring. I obviously told my roommates right away on the first day so that I didn't feel obligated to sleep with my wig on around them or anything. But it took me months to tell the three closest friends I made that year. Telling a total of 5 people by the end of the year was nowhere near accomplishing my goal of becoming completely open about it.
That summer (2014), I went to a conference that changed my life. It wasn't specifically for people with alopecia, but for anyone trying to see life from a different perspective, or to help tackle any sort of mental block they're having. On the 2nd day of that 3-day conference, the conference speaker encouraged me to take off my wig in front of the entire room of nearly 300 people. Despite how much that thought terrified me, I knew it was something I wanted to conquer someday, and I came to the realization: someday will always just be "someday " until I make someday now.
All eyes were on me. Through tears, I reached my arm up almost mechanically and took the wig off. The moment is a blur because of how much of a rush it was. The entire room stood up in a standing ovation. After sitting back down in my seat, it felt like I couldn't stop crying for almost an hour but tears from fear and anxiety turned into tears of happiness and excitement over what I'd just accomplished, and what a breakthrough that was for me. During the next break at the conference, so many people came up to hug me, to tell me how much I had inspired them by doing that, and sharing their personal stories with me. It was at that moment that I realized how stuck in my head I had been. I was so afraid of what people would think of me if they knew I wore wigs and was a bald woman. I had never imagined that I could inspire people.
About a week later, I was still home from college for the summer and felt a burst of confidence/inspiration. Without even thinking too much about it, I took out my laptop, opened Facebook, typed up a post, hit send, and then didn't look back at it for hours.
The reason I chose to make a Facebook post was because I wanted to tell as many people as possible about it all at once so I couldn't go back into my shell if my confidence went away again, and Facebook was the easiest way to do that. When I finally gained back the courage to check back later, the post had received so much love and support. I had been so irrationally afraid that people would judge me for it- that experience proved to me that I had been the one making it a big deal all along.
Even after making the post, it still took me a little while before I started switching up wigs more regularly, but when I was asked questions, I vowed to myself that I would straight up just say, "it's a wig/I have alopecia," no matter how much it terrified me.
In the summer of 2015, I started my YouTube channel on the topic of alopecia and wigs. Later that year, my favorite wig company (Aderans Hair Goods, which owns the brands that have always been my favorite: Rene of Paris and Amore) came across one of my first videos got in touch with me to collaborate. After a few months, they decided to make me their spokesperson.
This led to so many other opportunities for me as well. I got to start modeling for their catalogs both with and without wigs (I have modeled for them on 4 occasions now, with the 4th catalog coming out next month). Reviewing the wigs they sent me also really helped me to build my channel with wig reviews because otherwise I probably wouldn't have been able to afford such a vast collection to review. Having such a broad collection also helped to inspire me to switch up my wigs more often in my day to day life because owning so many beautiful wigs made me want to try out new styles all the time.
In 2016, I built up the confidence to post a picture of myself on Facebook without a wig, in a similar fashion to the post I had made on Facebook in 2014.
At the end of 2016, I even wrote my college thesis on the topic of bald women in the media which was such a fascinating topic to delve into (examining the context in which bald women show up in film and how this can have an impact on bald women in reality etc).
Please can you tell me a bit about yourself and your background (family life etc)?
I grew up on long island in New York. My parents separated when I was around 3 years old (it took years before they were officially divorced). I have two older brothers that I’m very close with. I grew up spending every-other-week at my mom’s and every-other-week at my dad’s, going back and forth with my brothers, who are 2 and 3 years older than I am. I’m still very close with my family, although my mom now lives in Pittsburgh. I’m vegan, a cat lady without any cats at the moment (haha), work in video production, and also run a YouTube channel on the side. I love music (I’m currently teaching myself how to play piano), being out in nature, hiking, going on adventures, rock climbing and lots of other things. I always love to have side projects going on, like my YouTube channel and my new blog that I just started.
When your hair started falling out around three years old, how did your parents react?
My parents were initially concerned that my hair falling out meant that I had other health issues. They took me to doctors, tried a few different types of treatments (nothing too intense, but I remember taking pills for a while, and my mom also tried a few different shampoos and conditioners on me that didn’t work). Once they realized that it wasn’t a sign of a more serious health problem, they treated it like no big deal. I think that’s really important for parents to do because if parents treat it like a big deal, then the child will think it’s a big deal as well. Both my parents as well as my Aunt Celia on my mom’s side always bought me cute hats and headbands to wear and never made me feel like I had to wear wigs if I didn’t want to. When I was really young, my mom took me to the Alopecia Areata Conference (run by the National Alopecia Areata Foundation) one year. I only have the faintest memory of it, but I remember things like: instead of being the only bald person in the pool where the conference was held, it was almost as if my brothers were the only ones with hair. I also remember another woman took off her wig at one of the events to show me she was bald too. I highly recommend that conference to anyone just finding out they have alopecia and struggling with it. I unfortunately haven’t attended since that one time I went as a young child, but I always think fondly of it, and would love to work with them in the future.
Did it fall out gradually over a long period of time, or was it quite fast?
I believe it happened gradually over the course of a few months, although I don’t totally remember because I was so young. My Aunt Celia on my mom’s side recalls that when I was really young and had hair she would style my hair for me occasionally, but it got to a point where she had to do all these funky hairstyles to cover bald spots until it was eventually too sparse to cover. Eventually it got to a point where my mom shaved my head. Even though I was probably around age 3, I do still have the faintest memory of that. I don’t think I totally understood why she was shaving my head at the time. I think I was upset about it, but since I was young with a short attention span, I'm sure I got over it pretty quick haha!
What led to you trying out wigs at seven (rather than sooner once your hair fell out)?
I hated going to the dentist as a kid. One time, I had to get a cavity filled, and I was not happy about it. So to cheer me up after the dentist appointment, my mom took me to a wig shop to play around with wigs. It wasn’t my mom’s intention to have me start wearing wigs from then on out, nor did I care about that yet. I got a cute, curly blonde wig, a hot pink wig and a blue wig. Around that same time, my dad also bought me a nicer-quality short blonde wig which ended up being my first wig that I wore consistently, whereas the first few I tried were mostly just for fun.
Do you remember how you felt in your wig for the first time?
I just thought it was fun. I wore it home and tried to trick my brothers that I was a different person. But I still didn’t care about wearing it consistently right off the bat.
What was your first wig like?
The first wig that I wore consistently was about shoulder length, blonde (because my hair had been blonde before it fell out), with bangs. It was a really cute style!
How old were you when you wouldn’t leave the house without a wig?
I think I was around 7 or 8 years old when I didn’t want to leave the house without a wig anymore. I was in the 2nd grade, and I was already wearing it pretty consistently at that point. But one day, I think I was at my mom’s house and something happened where I accidentally left the wig at my dad’s house and didn’t have it when I needed to go to school in the morning, so I wore a hat to school: my favorite pink, fuzzy hat. While at school, the desks were set up in little groups so each table had 4 or 5 students at it, and the boy next to me kept jokingly trying to pull it off. Looking back on that now, I’m sure he wasn’t trying to be mean and was just being playful, because I remember we were also sort of friends. And I also don’t think he actually would have pulled it off. But I remember the thought of him pulling it off scared me so much that I got up and told the teacher who asked him to stop. That was the last time I went to school without my wig.
This also contrasts with another experience I had in 1st grade, where my wig accidentally fell off in class, and at the time I thought it was sort of funny, but I still remember how every kid in my class stared at me in shock. It’s funny how, looking back on that story: of course they were staring in shock: they were all around 6 years old and my hair unexpectedly fell off, and I’m sure they’d never seen anything like it! But as a little kid, it’s easy to interpret that to mean that you’re weird etc.
How did the thought of other kids seeing you without a wig on make you feel?
It made me really nervous. It’s funny because as I got into 3rd grade and above, for some reason I thought that maybe the other kids had forgotten that it was a wig, and that I was able to convince them it was my real hair at that point. But that also meant that having it fall off was even scarier because I wanted people to think it was my real hair. (Looking back, I’m sure they all knew it was a wig because I went to a small school, and most of the kids already probably knew me from the time I wore hats, and from gossip etc.!)
When you say that from 10-19 years old you treated your wig as though it was your actual hair, what do you mean by this?
What I mean is, between those ages I wanted people to believe it was my real hair. Like, if people asked me questions about it I would just answer in ways to let them believe it was my real hair. My close friends obviously knew, but if someone asked me, for example, where I got my hair done, or what shampoo I used etc. I would just make up a lie about it. And the only time I would change to a different wig, I would do it over summer break so it was more “believable” that my hair changed over the summer (even though I’m sure most of the kids at my school already knew it was a wig! Not sure who I thought I was fooling haha. Which is even funnier because if they already knew all along, I could have loosened up a little, had fun with switching wigs, because since they already knew, what difference would it have made?)
You mentioned that you built up a hard exterior (during school) to stop people from questioning you about your wig, do you think your hard exterior shaped how you viewed yourself and your alopecia?
It definitely caused me to see it like it was a big secret that I couldn’t let anyone know unless I decided I wanted to tell them (which also took a lot of courage for me). It did make me feel sort of like an outcast, but in a way that I sort of brought upon myself. Branching out into other social groups meant a higher potential for people to judge me, say things behind my back, and I sort of expected the worst of people for a little while. Or at least, expected them to think I was weird for it. It just felt safer to stick with my close-knit friend group of people I already trusted.
Much of my high school was very cliquey and catty though, so I may have been the same way whether or not I had alopecia to be honest!
Would you say you’ve still got that hard exterior now?
I think I do have the natural instinct to protect myself and be a little cautious when I first meet someone, but I have also learned that most people have good intentions. I’ve also learned that, even if someone DOES judge me for having alopecia (which I don’t think most people do), it doesn’t matter at all what they think. It’s so much easier now to not let it affect me. One of the most important things I’ve learned over the years is that the opinions of others don’t matter, and they only have as much power as you give them.
How old were you when you realised you didn’t want it to be a secret anymore?
Deep down, I always WANTED to be open about it but was just too scared. It seemed way too daunting for so long. I loved the idea of being someone that just changed wigs all the time and tried out new styles, but the thought of facing all the questions about it made me so scared to go through with it. Especially in high school where everyone is more judgmental. There were a few occasions where I did switch to a different wig in high school, but it made me really nervous to do so, so I didn’t do it often. Freshman year of high school, I spontaneously decided to switch to a brunette wig for a little while, which I loved (my usual was blonde). I think that that made it obvious that that was a wig, but I think I still attempted to tell people I dyed it. Senior year of high school I also got a little adventurous, switching between a short wig and a long wig on a regular basis, but I just tried to pass it off as having hair extensions. At that point, I don’t think I was really trying to fool people, but just did it as a way to not have to deal with questions. Like, I knew people probably didn’t believe me, but it was just a way to end the conversation faster.
Why was moving to university/college at 18 a turning point for you?
It was a turning point because I knew it was a chance to basically start fresh. No one knew me there yet.
What did the fear of being known as a bald woman prevent you from doing for so many years?
Lots of things, unfortunately! I quit the swim team when I was around age 9 because I didn’t want to swim without a wig anymore. I wanted to do gymnastics as a kid, but was afraid that my wig would fall off. As I got older, I was hesitant to date because I was afraid to open up to someone I was dating about it. I pretended I was afraid of rides like roller coasters as an excuse to not go on them when in reality, I was afraid my wig would fall off. I’ve slowly conquered these things over the years:
I went on my first roller coaster in May of 2018 (in a wig, and it somehow didn’t fall off!)
I swam laps at my gym pool yesterday for the first time without a wig, which felt so freeing (August 2019). Of course, it wasn’t the first time I’ve swam without a wig since I was young, but I only ever would if I was with really close friends or family, or on vacation somewhere where I couldn’t possibly run into anyone I knew.
How has starting your YouTube helped you become more open about your alopecia?
It definitely helped me to get more comfortable talking about it. Even after I decided I wanted to be open about it, I was still nervous whenever I did talk about it to anyone. So speaking about it for my YouTube channel helped me to get more speaking about the subject in general. The positive response I got on my videos also helped me to realize that most people are very supportive. People aren’t as scary and judgmental as I used to think they were, and anyone that does react negatively isn’t anyone worth spending any energy on. It also helped me realize that I had the potential to inspire others with my story, which helped to give me strength to push forward and to keep making videos.
How do you feel about people seeing you without a wig on now?
I’m still working on getting comfortable being out and about without a wig, but I have made a lot of progress over the years. I’ve always had a select few people that I feel 100% comfortable being around without my wig, like my family, a few close friends, and my boyfriend (which took a while to get comfortable with). I regularly post photos and videos without a wig on social media, which I feel totally comfortable, even confident about. The biggest thing that scares me about going out without a wig now is people staring, or asking uncomfortable questions about it. Also, with photos, I can control exactly what people are seeing, so it’s a little more intimidating in person where people can see me at all angles!
I really want to start getting comfortable going out without a wig before the end of 2019.
When I was in St. John in the Caribbean (US Virgin Islands) earlier this year in May, I spent most of my time there without a wig on the beach, and even going to restaurants in just a bandana, which felt very freeing! Part of the reason for that was because I got such a bad sunburn on my head that it was too painful to wear a wig for long periods of time haha!
I love that you wrote your thesis on bald women in the media! Can you tell me a little about this?
Yes! I can also send it to you if you want to look through it. My basic conclusion was that when there is a bald character in TV shows or movies, it’s often one of three things: she’s either sickly, alien/Sci-Fi, or evil.
Sickly: either on the verge of death, frail, maybe has cancer. (But also typically portrayed in a weak way).
Alien/sci-fi: so many examples of this. The aliens from the movie Valerian; Lieutenant Ilia from Star Trek (which wasn’t necessarily a negative portrayal, but just that it was used to be something far into the future or other worldly, therefore, not something that’s normal in modern times).
Evil: There was this whole scene from the movie The Wolverine (2013) where, right as the main villain Viper reveals that she is evil, she also rips off her wig and skin to reveal she’s basically a lizard monster. I cried when I saw it in theaters because of that.
Film is a visual form of media. So to show a character is evil, how do you show that visually? According to Hollywood, you make them unattractive. How do you make them unattractive? Apparently you make them bald (among other things).
In recent years though, there have been a few great depictions. For example, The Ancient One from Doctor Strange was a great example of a strong, powerful bald woman. She sort of falls into the Sci-Fi category because of the nature of the movie, but she was bald for religious reasons. This character is also fascinating to me because in the comics, this character was a bald male, which is more normalized. So maybe the fact that she was transposed from a bald male to a bald female opened the door for a powerful, bald, female character (because bald male characters are often portrayed as powerful, while bald female characters are often portrayed as weak).
Also, some reality TV examples: in the most recent season of America’s Next Top Model there was a bald model, Jeana Turner, (who came out as the second place winner), and there is currently a girl with alopecia on So You Think You Can Dance (Madison Jordan). Both of these are so inspiring to me, and I’m sure to many other girls with alopecia across the world. This is why representation is so important in media (not just of bald woman, but in general, of all races, gender identities, sexualities etc. etc. ). (Representation for bald women is sort of low on this priority list right now because we have a whole other slew of representation issues that need fixing first, but still interesting!)
How does your alopecia affect you when you meet new people now?
I pretty much just tell people as it comes up, but I don’t stress about it anymore. Usually what happens is, someone will meet me wearing one wig; and then the next time they see me and I’m wearing a drastically different wig, I usually explain at that point that I have alopecia and wear wigs.
How has your alopecia impacted your dating life?
For the longest time, I avoided dating because I knew that if I started dating someone I would have to open up to them, but it just seemed so daunting. I let this affect me in high school and going into college. During my freshman year of college I met the guy that became my first boyfriend. When I met him, I wasn’t open about having alopecia yet, so he didn’t know. Around that same time was when I decided to make a post on Facebook about having alopecia, just to sort of “come out” about having alopecia to all my Facebook friends, just to tell as many people about it at once. So that was how he found out. I was nervous for the next time I saw him after making that post, but he didn’t really seem to care at all. It took me a long time to get comfortable being without a wig around him, but eventually I did, and it was so freeing and wonderful.
We eventually broke up but stayed on good terms. But that experience proved to me that being bald didn’t make me “undateable.” In fact, I learned that most guys didn’t seem to care at all. I even tried out dating apps for a little while and included pics of myself in different wigs AND a pic without a wig at all. I still got plenty of matches, and for most guys, it turned out to be a conversation starter. Some guys said it was inspiring to them and that they thought it was really cool. Having alopecia almost works as a filter to get guys that are going to be shallow about it out of the way right off the bat. If a guy thinks it’s weird that I have alopecia, I wouldn’t be interested in him anyway!
Have you ever had any public mishaps with your wigs?
Not for a long time! I did have a few in my childhood though. Like one time, when I was really young, I was ice skating with my mom, I slipped and fell, grabbed her for support, causing us to both fall, and my wig flew across the rink. We both thought it was SO funny at the time though (that was before I was really self-conscious about it yet.) Looking back now, that must have shocked a lot of people, it’s such a funny image! For anyone that is new to wigs and worries that the might fall off- as long as the wig fits properly, it shouldn’t be an issue in most cases!
What sort of reaction do you get from your Instagram posts?
I get a really positive and supportive response whenever I post a photo of myself without a wig on Instagram. I get a lot of messages from people telling them that I inspired them. Hearing that always makes me so happy. I think of how insecure I was as a kid growing up with alopecia. So to think that there are other people out there, both older and younger than I am, who are as insecure about it as I used to be- it really warms my heart that I might be able to inspire these people. It’s also cool from a social media management perspective as well, trying to use my Instagram to grow my YouTube channel, because it also helps me to stand out as an aspiring model, actress, and youtuber, because it sets me apart from a lot of other people. Think about that helps me to see it as a unique trait rather than a flaw.
What message would you like to convey?
That having alopecia doesn’t mean that you have a lower quality of life in any way. Alopecia only affects you as much as YOU let it. All alopecia does is make us lose our hair, which we can’t control. But we are in control of how much we allow it to affect us emotionally. If we see it as a big deal, then it’s a big deal. But we can also choose to have fun with it: try lots of different hairstyles all the time etc.
Life is too short to stress about hair. I wish I had become open about alopecia sooner. I can’t believe all those years I missed out on switching up wigs and letting myself have fun with it! It’s so pointless to let ourselves be controlled by what other people MIGHT think of us. And on top of that, what we might EXPECT people to think of us usually isn’t true at all!
I think we’re also moving into an era where unique qualities are celebrated rather than shamed, especially with the body-positivity movement. There’s no better time to celebrate alopecia as a unique quality!
(And a few follow up questions she sent me later)
How did you manage to keep your alopecia a secret from your boyfriend?
He found out about it before he officially became my boyfriend. (Edit: like I said, I was clear about this!!) But when we first started dating (before we became "official"), I kept it a secret the same way I kept it a secret from anyone else. I just always wore the same wig every day, which was very realistic-looking, so most people just assumed it was my hair. He ended up finding out about my alopecia when he saw the Facebook post I made announcing it. I was afraid of how he would react the next time I saw him in person, but the next time I saw him, he told me he saw the post and thought it was cool that I opened up about it. He didn't pry or ask more questions, and he also didn't think anything negative about it, which was what I was so afraid of. It made me realize that having alopecia was only a big deal to me because I was treating it that way. If I acted like it was no big deal, then other people would be more inclined to see it that way as well!
How long did you try and keep it a secret from him?
I started hanging out with him around March of 2014, and then he found out via the Facebook post around August of 2014. Even then, I was too scared for him to see me without a wig for many months after that, which usually meant sleeping with my wig on if I stayed over at his house etc.
Do you have any ways other people can try to conceal their alopecia if they want to?
If someone wants to conceal their alopecia, wigs are probably the easiest, especially if the hair loss is extensive. Lace front wigs with monofilament wig caps are the most natural looking in my experience. Wigs with bangs are also great for hiding the hairline of the wig. If someone is just trying to cover small patches of hair loss, they can use hair clips and headbands to try to cover the patches with their own hair. If someone has thinning hair on the top of their head, they can use a topper (which is like a partial wig) just to give their hair extra volume and cover the thinning parts on top. There are also "halo" wigs which are the reverse of toppers- they cover hair loss around the sides of the head.
Another product that I've heard about is Toppik, which is a small bottle of hair fibers that some people use to cover small patches. I haven't used it personally, but I have a friend that uses it sometimes and it works wonders for covering small bald patches!
(End of Interview)
(To hear more about Abby's story, visit her YouTube channel and Instagram).