living with alopecia

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Sharing this story has been in my mind for five years that I’ve had alopecia. Alopecia is an autoimmunity disease that causes hair loss to a different extent. I have alopecia areata, which symptoms include bald patches on scalp, eyebrows and lashes in my case. For many years I felt alone with alopecia because I was too ashamed of my condition to reach out. At times I was just tired of thinking and talking about alopecia that I ended up hiding it for years even from my closest friends. Many with autoimmunity struggle in hiding like I did but lately I’ve seen people with alopecia sharing their stories on social media. I’ve even gotten to know about others suffering with alopecia in my life. It took me five years to get to this point where I’d rather share my experience than hide it as I realized how important it was for me to see and know others who had alopecia.

I also wanted to share this now since my hair is falling out again and I’m going to start using wigs soon. So much great things have happened already this year and more are bound to happen and I don’t want to spend more time being afraid and ashamed. So from now I’m going to do what I’ve been wanting to do for five years: be more open and keep sharing my experience with living with alopecia💛

my brother’s girlfriend was trying to “relate” the other day. she has long, beautiful brown hair and she was trying to locate a “patch” she has.
she couldn’t find it so she had to get up and go to the bathroom to search in the mirror.
i waited patiently.
she came back with her finger over it. “see?”
i pretended to see a tiny little area that was thinning, most likely because she’s 50 and well, hair thins as you get older.
“you aren’t the only one,” she said triumphantly.
*sigh*
you’re right, bitch. i’m not the only one. my tumblr is filled with heartbreaking stories and images of all ages, ranging from spots to complete baldness all over. let me take a picture of your relatable, dime-sized place that is missing a few hairs that you couldn’t find without a mirror. you’re in the club now.
THE NERVE…

Living with Alopecia in Gifs - The Conversation

“It’s only hair loss" 

At least it’s not cancer"

“At least it’s nothing serious" 

Please stop, y'all. Don’t compare conditions. While it isn’t incorrect to say that it is better to have alopecia areata than cancer, it’s also a stupid thing to say. Not only does in invalidate the feelings of alopecians, and then cause guilt about those feelings, it’s also something that you would never do about other conditions. 
"Oh you have eczema? Well, at least it’s not leprosy”. 
“…what?" 

i ain't bragging but...

the other day, i posted about my alopcia progress.
in less than 5 minutes, i took it down, due to an anon apparently having a bad day and deciding to rain on my parade. this person had confused my happiness with being boastful and made sure to remind me that although i have a full head of hair now, it’ll fall out again someday.
yes. i am aware of that. i even included it in my post. that’s the scary part, is allowing yourself to be happy that you have hair again. i am very thankful, grateful and blessed to have this hair. i thank the alopecia gods every day.
mostly, the post was about how bizarre my new hair is and how fast it has grown since last May. i have always had very straight, very coarse and heavy, hard to manage hair. the kind that will make you almost late for things because it will never do what you want it to or look right. this new hair, it grew back in blonde and curly, thin little hairs, but lots of it. it requires very little effort, as i just wrap a towel around it out of the shower and after 5mins, take it down. no gel, no hairspray, just a lil olive oil hairdressing and i’m good to go. it’s bouncy and has tons of body. these are all things i am not used to.
i used to hate going anywhere on the weekends. it required a hat or bandana or head wrap, even in the sweltering summer. people would look at me strangely, but not quite as strange as if they had seen what was under my head cover.
what’s the secret? i don’t know. it was a lot of things for me. last June, i changed departments where i work, which lifted a huge amount of stress and anxiety off of me. i got back on a workout regime. then, in October, my mom had a stroke and i didn’t think about my hair for a very long time. it seemed i just woke up one day, and there was all this hair. i think part of it was putting it out of my mind, due to other things overruling the significance of hair.
i also stick to things that work. for a while, i was using Aphogee products, which worked great. i ran out of shampoo one day and went to Sally’s for more but they were out as well. i didn’t want to try anything new but the next time i was at my local supermarket, i went down the organic aisle and discovered JASON products. i chose the jojoba ‘Long and Strong’ shampoo and conditioner. these work so well with my hair, especially it being in a delicate state. i think they have really helped it grow and they keep the frizz down. plus, this particular formula smells soooo lovely, like roses :)
if all this sounds boastful, i don’t mean it to. i want to help. i want you to have hope. i want people with this crazy disease to know that we’re all in this together and i am not dismissing my own battle just because i have hair again.
i have alopecia, and i always will. but i also have faith, and i always will.

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[Four images: 1- a 20 something white woman with alopecia smiles into the camera with lots of trees in the background. 2- same woman and her partner look super cute together. 3- same woman and her friend sit side by side on a grassy hill. 4- same woman on a hike with trees and the ocean in the background.]

Happy International Alopecia Day 2013! I decided to take pictures of bald people (ok, maybe just one person, myself) enjoying life.

1-Me loving Golden Gate Park in San Francisco.

2-My partner and I showing that people with alopecia can have loving and meaningful relationships.

3-My wonderful friend and I showing that some people with alopecia look like they have a full head of hair and others don’t!

4-Some people with alopecia go on gorgeous hikes!

To simply exist in a world that wants denies your existence is radical.  There are so many people who can only imagine baldness being a result of chemotherapy, so they assume I have cancer without ever giving me the opportunity to explain my identity.

I envision living in a world where I can choose to explain my identity to others if I desire, and where I do not feel forced to explain it because people make assumptions about my identity based off my appearance. 

ALOPECIA MOMENTS

The next thing I’m working on (and this, I think, will be a continuous project) is to collect anecdotes and the little incidents that happen daily for people living with alopecia. The things people say and do (well intended or not), and the random things you encounter that affect you differently because you have alopecia. 

If you have any of these stories, please send them along! Or submit them! 

XOXO