‘I’ll never forget the comment she made: ‘You’re not you without your long, beautiful hair!’ I was deeply embarrassed.’: Bride with alopecia embraces baldness, ‘Hair does not define beauty’

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“Fall of 2016 was when I first started noticing more hair than usual falling out on my brush. I always had healthy, long, dark brown hair since high school, so it was normal to constantly be shedding strands of hair. My hair was so long and thick that 90% of the time I never styled it because it was just too much hair and my arms would get tired. I had the kind of hair everyone noticed right away and would wish their hair could be just like mine. I was proud of my hair, but never attached to it – I always considered chopping it off, trying out shoulder length layers, or dying it a fun color, but then would chicken out or my boyfriend and friends would beg me not to cut off my ‘beautiful long hair.’ My hair had unintentionally become part of my identity.

Courtesy of Ana Tan

It wasn’t until I attended a friend’s wedding in Chicago the same September, that I really noticed my hair feeling not as full and constantly shedding everywhere. I recall making a comment to my boyfriend at the time, and kind of panicking as I was rushing to curl my hair for the wedding, but quickly dismissed the thought since I was still so young and healthy, and I’d rather be in the moment and enjoy our friends while exploring Chicago. 

I was mostly in denial of any hair concerns and tried to pretend everything was fine, but by the end of October I was starting to get scared my hair was not going back to its normal healthy self! I had not been to the doctors in a couple years because I never had health problems, so I finally made an appointment with my doctor to ask what was happening to me. His best medical advice was that I was probably just stressed out, not to worry about it, and I would get some blood work drawn to see if my Vitamin D was low. Lo and behold, my blood work came back completely normal and I still had no answers.

I did not really believe that my hair falling out was due to ‘stress,’ since I felt like I was living a great life by the beach and had an amazing boyfriend and friends, but I was trying to hope for the better. I waited another month while my hair was still falling out at a crazy rate, and I started to become withdrawn, sad, and depressed into Thanksgiving, which was the darkest and most depressing holiday season I’ve ever felt. My poor boyfriend, Nick, would try to lift me up and make me feel better as best he could, but I know that he was struggling watching me scared at losing my identity and lashing out whenever I’d get fixated on my hair. I remember feeling so defeated on Thanksgiving Day as we went up to the Palos Verdes Cliffs for sunset, just the two of us. It was so peaceful and beautiful – and for a second, I truly forgot about my hair loss and felt happy. This was probably my last happy memory of my old hair: thinning, but still looked long and wild, and I didn’t need to use makeup, wigs, or hats to hide from the world.

Courtesy of Ana Tan

No one in my family had thinning hair or even receding hair lines, so I started to research what other causes there could be and discovered alopecia areata – patchy hair loss caused by your own immune system attacking the hair follicles. I didn’t have any patches, just thinning, so there was no way that could be me. I made another appointment, this time with the nurse practitioner. She listened, but again I found she didn’t know much about hair loss or alopecia. The only suggestion she gave me was to just use Rogaine for women (which ended up doing nothing for me) and gave a referral for a dermatologist.

I immediately set up an appointment with the dermatologist, who was also a little confused by my hair loss since it was spread out and not patchy. He said I had lost 50% of my hair, and would need to get a skin biopsy to rule out other diseases such as Lupus, etc. I came back to his office a week later, where he diagnosed me with diffuse alopecia, meaning it was diffuse hair loss and thinning all over. The dermatologist gave me a huge steroid shot and said it should stop the current hair loss and start growing back. Receiving this diagnosis was a huge relief: I finally had an answer and a chance to hopefully get my hair back. 

I was still so self-conscious of my thin hair and felt this weird sense of shame, so I really only shared my diagnosis with my boyfriend, immediate family, and a handful of close friends. Although they were so supportive, it was hard for me to feel like I was pitied, and so I hid at home most of the time. I decided I needed a wig because I was neither ready nor comfortable telling my work anything, and the hair loss was too much to cover with makeup. I ended up breaking down crying at the wig store and buying a $600 human hair wig I could not afford, just so I could hide my thinning hair at work and avoid all hair conversations. I don’t even know if anyone could tell I was wearing a wig, but I hid behind that uncomfortable wig every day, consumed with anxiety that someone would find out I had no hair! 

By early 2017 I had tiny little hairs starting to grow and fill in the bare thinning spots! I had cut the length of the little amount of hair I had left, and if I wore a thin high ponytail on the weekends (it would cover most of the bald areas with a little bit of makeup)! I was still wearing a wig to work, as I was still very uncomfortable acknowledging that I had alopecia. But, on the weekends, I began to feel okay going out for a couple hours to run errands. By March 2017, I was feeling a little bit more hopeful that my hair would grow back, and I was excited to start a new job with a fresh start and my thin little ponytail!

I had another wedding to attend that would be my first big public event since my hair had started falling out, but I felt comfortable going with my little hair and not having to wear a wig! It was amazing being able to dress up again and go out. I remember one individual saw me and was shocked to see how short I had ‘cut’ my hair. I’ll never forget the comment she made: ‘You’re not you without your long, beautiful hair!’ She meant well, and obviously didn’t realize the hurt she caused, but I was deeply embarrassed, and chose to keep my chin up and still enjoy my one night out. I had the best night celebrating with family and friends, and felt like things were getting back to normal.

Courtesy of Ana Tan

The next morning, I woke up with a pile of tiny hairs all over my pillow. I don’t know if it was because I was dancing all night at the wedding, or because I had a few drinks, but basically all my regrowth fell out and my hair was falling out FAST again. I was devastated, frantic, and a crying mess. My sister came with me to a wig shop where we found another shorter and thinner style wig that I could still wear to my new job and look similar to before. In a span of a week, about 90% of my hair fell out in patches. I knew that this was for sure Alopecia Areata progressing to Alopecia Totalis, and there was nothing I could really do. There was and still is no cure, and I did not want to endure painful steroid shots to the scalp. 

Courtesy of Ana Tan

Exactly one week later, on March 18, I decided I did not want to live in shame or hide behind wigs anymore. I wanted to feel truthful to myself and the world, and own my alopecia. I went back and forth all day, and finally asked Nick to shave off the rest of my hair. It was an emotional and scary experience. I had never been near a buzzer in my life and so the loud noise was terrifying, all while trying to mentally prepare myself for this huge change. There were again lots of tears, stopping and starting, talking through my decision, and eventually we got ALL my hair shaved off, and I was BALD. I was in shock at how different I looked, but I finally felt a huge weight lifted from my shoulders (maybe it was all that hair), and I didn’t hate what I saw. I think the months of a cyclical emotional toll around losing my hair, having some regrowth, and living in fear of anyone realizing I wore a wig had finally reached its threshold.

Throughout this journey, I had imagined losing all my hair as being the ‘end of the world.’ In actually, reaching the point of being bald ended up not being the end of the world. I put on a cute outfit, cried, washed my face, redid my makeup, and did a very mini, poorly lit photoshoot. I was going out to Hollywood that night with Nick (he’s a musician and had a show at The Hotel Café), and we would be seeing all our friends and family. As silly as social media is, it can be such a useful and safe tool to introduce my new look to the world. I wanted to try to give everyone I’d be seeing that night my story and decision, and try to avoid the overwhelming conversations all night long. To my surprise, I was flooded with so many supportive messages online and in person that night. I had many moments of happy tears. I truly felt so loved and grateful to be at peace with myself, living my true self.

Courtesy of Ana Tan
Courtesy of Ana Tan

After that first night out, it took about half a year till I felt normal and stopped having bad days or being bothered by other people’s reactions towards me. I had a ‘fake it till you make it’ mentality and kept my chin up the whole time, but it was hard the first few months. I did feel free, but I was incredibly self-aware and self-conscious of the stares and comments I received in public all the time. I observed that many people felt uncomfortable with others that look different and feel the need to alleviate those feelings by sharing a relatable story or using humor. I know that they all mean well, but those responses end up somehow invalidating my experience with alopecia and were hurtful. I mostly would respond with an educational approach as most people hadn’t heard of alopecia, but inside I was always embarrassed, angry, put on the spot, and felt as if I could not live a normal life; instead, I had to deal with these responses and the constant staring. I was able to handle all the reactions for the most part, but there were a couple hard days that I would cry from frustration and have to vent, mostly to my boyfriend.

Based on the lack of education and awareness, and even my own ignorance prior to developing alopecia, I decided to get involved with the National Alopecia Areata Foundation (NAAF). I quickly joined their legislative liaison group to advocate towards meaningful policy and change. This shift in focus helped me feel like I was contributing to the greater good for the alopecia community and would hopefully change the stigma on hair loss. I got to meet more people with alopecia online and through this organization, was advocating to my local congress men and women, and fundraising for NAAF! I even went to Washington, DC, to advocate on Capitol Hill with NAAF, and was asked to be a featured speaker at the 2019 NAAF conference in Seattle. All these efforts in advocacy really showed me the positives of my alopecia and changed my outlook on this disease. I slowly developed way more confidence as a bald woman than when I had long hair. 

Courtesy of Ana Tan

I started my own blog and social media page called ‘Bald N Bougie’ to highlight what normal, amazing, and beautiful life I get to live as a bald woman. I want to show people that hair is just an accessory, and it does not define beauty. While I believe there should be more resources, treatments, and research done on alopecia, I also believe that it is just as beautiful to be uniquely you. By March of 2018, I decided to celebrate my 1-year Baldiversary with all my friends and family on rooftop bar in LA. It was a Bald N Bougie themed party where we wore our bougiest all white outfits with (faux) fur coats and celebrated my amazing first year of alopecia! It was one of the best nights of my life, and I continue to celebrate and encourage everyone with alopecia to celebrate their own Baldiversaries. 

Courtesy of Ana Tan

I don’t have bad days anymore, and I have completely embraced and fallen in love with my bald head. I love being able to share my story and experiences with others because I remember how lonely and heart-breaking it was to go through the hair loss experience. I want to show others dealing with hair loss that your hair does not define your beauty: you can still live your best life! This year in January, I married Nick, and showcased my bald head with no veil or hair accessories. I was so proud to be a bald, beautiful bride!”

Courtesy of Ana Tan
Courtesy of Ana Tan

This story was submitted to Love What Matters by Ana Tan of Los Angeles, California. You can follow her journey on Instagram and Facebook. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories!

Read more about alopecia here:

‘Her hair loss isn’t from stress.’ The pleasant chit-chat stopped. ‘There’s no cure for this.’: Little girl diagnosed with Alopecia starts head scarf company to ‘help all of the bald kids’

‘I could never date someone without hair.’ I’ll never forget the look of disgust on his face.’: Woman with alopecia ditches wig, ‘It has shown me I can do anything I set my mind to’

‘I called my mom to tell her about my dream. ‘Maybe you’re pregnant.’ I took a test. Two faint lines.’: Woman with alopecia elated over surprise pregnancy after public miscarriage

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