Alopecia blogger on bullying, dating, and theater in NYC

NYC is the best because everyone has something. People will approach me about my spot (in a nice way!) once in awhile….I once had a homeless dude follow me for a block yelling, “Baby! What’s wrong with yo’ head?” That actually made me laugh hysterically, and I feel like I want it to be the opening scene in a book/TV series I eventually want to create about my experience with alopecia.

Last month, I met Lindsey at a support group for individuals living with alopecia areata. Alopecia areata is an autoimmune disease where the body attacks its own hair follicles to prevent hair growth, often leading to permanent hair loss. Although the condition is non-life threatening, it can still have a significant impact on an individual’s self-image. Presently, there is no guaranteed cure, but some are able to minimize hair loss with maintenance therapy like topical creams or monthly steroid injections into the scalp. Others may forego treatment altogether and opt for hairpieces or wigs, or simply not deal with it all.

Lindsey started a blog Not So Fair Hair a few years back, chronicling her experience growing up with the condition. When I first met her, she was donning one of her floppy “fab hats.” Her sassy and infectious personality made it hard to believe that she was ever shy growing up.

Tell us a little about yourself! 
After growing up as a total theater dork in Fairfield, Connecticut, I’m living my lifelong dream combining my passions for theater and writing at Broadway.com. I’ve been working there and living in New York for just over a year now. I enjoy Zumba, podcasts, ice cream cones, giraffes, a great grilled cheese, and so much more.

What was your first experience with alopecia areata?
My mother noticed patches of skin during tub time at age 2. I was diagnosed with alopecia areata a few weeks later. I was pretty bald as a kid and had to wear hats in school, but alopecia areata did in fact lead me to New York. At age 5, I had an appointment at Columbia. It was my first time in the city and according to my mom, the first time this super shy gal acted like “a total diva. You were a total diva once you got to New York.” 

How did it impact your childhood? 
My dad also has alopecia areata, so they have always been incredibly supportive without acting like my entire body is on fire. My mom has offered to shave her head at least once a year for as long as I can remember. She drove me to get a wig on a weekend when I was about 5 and didn’t even get mad when I grew tired with it and deemed it “lame and itchy” 20 minutes later on the car ride home. Whatever I wanted to do (or didn’t want to try), they have always been all ears. Hats and a few creams were my go-tos, as my parents didn’t want to subject me to painful injections until they felt I was old enough to make the decision for myself. As far as school, my teachers knew the drill, but kids can be super cruel. I had my share of bullies and was pretty miserable a lot of the time. Super shy, too. But that only made me appreciate life more once I broke out of my shell in high school drama club.

What was it like in school?
Ironically enough, I had a s*** time in Catholic school from kindergarten to eighth grade. I did have a few great, supportive friends, but I feel like late night sleepover conversation would always take a turn to them asking me a million questions about it. In retrospect, that’s totally fair, but at the time, I wasn’t emotionally prepared to deal with that. I did meet my current best friend in kindergarten though. Tiffany. She’s the best. If I want to talk about it, she’s all ears. Otherwise — what alopecia? It doesn’t define me, and she knows that. I wouldn’t change a thing about my educational experience; I just hope to raise kids that are tolerant from a young age if I choose to have them.

How did things change in high school?
High school was much better.  By then, I had enough hair to attempt a super sexy comb over look; I would pull strands of hair over my bald spot and set the strands in place with brightly colored butterfly clips. Sometimes, I did wear hats in high school, and a close friend of mine once mentioned that my hair looked beautiful simply down. I wouldn’t bother wearing hats when I was home/outside of school with friends. That close friend actually passed away at the end of my junior year. Since then, I have taken her advice and simply worn my hair down, spot out and all. Recently, I have noticed some loss, and it has made me a bit self-conscious, which is an adjective I’ve been fortunate not to use to describe myself in years. I splurged on some super fab hats, and I wear ponytails a lot to pull my hair back over the spot. I’m unafraid from time to time to just wear my hair down again. It truly depends on the day. On the whole, I have a pretty strong sense of self. But we all have our s*** days, alopecia or not.

I’ve had a few s*** experiences where guys will disappear after what feels like a totally awesome date, and of course, my mind goes straight to the alopecia as the reason why. But that also happens to my gorgeous female friends with full heads of hair; some guys are just trash people.

Has it affected your dating experience?
Ha! Growing up, I kind of settled into the fact that I didn’t find myself conventionally attractive. I had crushes, but any crush I had felt like a fun little celebrity crush; it was just going to be unrequited. I started having guy friends in high school, and that was fun. It was cool for dudes to seem like people as opposed to these creatures that either a) bullied me or b) were super nice to me but would never want to make-out with me in a million years. I grew into a very close friendship with a guy towards the end of my high school experience, and he became my first boyfriend. He was my first love and could not have been cooler about my situation. Even though it didn’t end up working out, it was such a wonderful experience to find a love and friendship like that in someone. He really taught me how to be confident in myself and that I was worthy of love, and I’ll always be grateful for that. As far as dating as an adult, it can go either way. I’ve had a few s*** experiences where guys will disappear after what feels like a totally awesome date, and of course, my mind goes straight to the alopecia as the reason why. But that also happens to my gorgeous female friends with full heads of hair; some guys are just trash people. I’ve only had one guy say that alopecia was the issue; he is an example of a trash person. But I also have been out with wonderful guys that really don’t have a problem with it. My mentality is this: I shouldn’t worry about whether my alopecia determines the way a guy feels about me. The way he reacts to it should determine how I’m going to feel about him. How I feel about him is all I have control over, so I can’t waste time worrying about the rest. It’s tough to remember sometimes.

How has your attitude about alopecia changed?
I’ve definitely become way more confident since my childhood (as people do, hopefully). I would say that I am truly thankful I’ve had it my whole life. It wasn’t some terrible surprise that happened in my teens or twenties. The unpredictability of it can be startling, but having had it for so long, I know it’s simply a part of who I am.

How did Not So Fair Hair get started?
I was walking on the street during my senior year of college, and a mother kindly approached me. She noticed my spot and very kindly asked me if I had alopecia. I told her I did, and she told me her son had just been diagnosed. She asked me about treatments and such, and we had a super nice chat. She just seemed so relieved after we spoke. I had to laugh, as at that point in my life, I forgot that I had alopecia most of the time. I was that confident about showing off my spot. I wanted to pass that confidence along to others and make people feel the same way I had hopefully made that mother feel.

Do you wish more people knew about this condition?
Sure! But I can guarantee there’s a cosmetic condition I also know nothing about. More than anything, what’s refreshing to me when I meet new people, be it in a romantic, professional or social setting, is if people don’t know about it and are excited and eager to ask questions. I think I want to see the world be more open. Then the next step is for people to be more knowledgeable. But I’ll take openness first.

What’s it like having alopecia areata in NYC? 
NYC is the best because everyone has something. People will approach me about my spot (in a nice way!) once in awhile, as that mother did. I once had a homeless dude follow me for a block yelling, “Baby! What’s wrong with yo’ head?” That actually made me laugh hysterically, and I feel like I want it to be the opening scene in a book/TV series I eventually want to create about my experience with alopecia. Of course, I feel lucky that it gives me so much material to write about. In the workplace, I currently have and have always had the most supportive co-workers. They cheer me on, ask respectful questions and share their own stories about having alopecia or knowing someone who does. Whether people are aware or not, most people know someone that has it to some extent.

Do you have advice for people who are just starting to experience hair loss?
14595583_3011942052604_3054930864102653992_nTake some time to be upset about it, but don’t go it alone. Share this with family, friends, co-workers or a therapist that you can trust. Explore treatment, but realize that it is unpredictable. Find whatever works for you: hats, wigs, scarves, free ballin’ as I do. Know that it’s not the end of the world, even though it may feel like it. Get informed about it. Know that you’re beautiful, confident, sexy and worthy of love. Remember that life’s too short to wallow.  

 

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