Women’s Hair Loss Project – Help, Hope & Understanding

Women’s Hair Loss Project – Help, Hope & Understanding by Guest Writer “Y”, Founder of WHLP

Greetings to all in PCOSDiva land! My name is “Y” and I am the founder of The Women’s Hair Loss Project (WHLP), an online support group and social network for women dealing with hair loss. Often times women think that the “Y” is representative of “Why Me?” which is fitting of course, but alas that is not what it stands for. It is simply the initial of my first name.

I met Amy when I first joined Twitter back in June of this year, and I’m honored that she has asked me to write a post for all of you to share a little about The WHLP and myself.  She will also be sharing her PCOS knowledge and expertise in a guest blog post for The Women’s Hair Loss Project next month.

So with all of that said, lets get on with it!

Please Hair, Don’t Leave Me Now – My Hair Loss History

I was blessed with lovely, amazing thick hair, it was the kind of hair that women envied and hair stylists ran from because it was so thick. I actually got charged extra to have my hair curled for prom, which sort of seems laughable now. It is hard to reflect too much on my former hair because it is just that, my former hair.

In June of 1999 my whole world came crashing down, I was 21 years old and was definitely not prepared for how my life was about to drastically change. After having stopped the usage of the birth control pill, Loestrin FE, I found myself shedding handfuls of hair each and every day. I’d wake up and my pillow was FULL of hair, showers were a complete nightmare. My hair would be pasted all over my body, the walls of the shower, and stuck in the drain. When I would comb my hair, it was even worse, the hair just kept coming out with no end in sight.

I began to see a flurry of doctors; I even travelled far distances to see some of “the best.” Many doctors dismissed my hair loss because they didn’t see anything. Boy oh boy if they could see me now, surely I’d get to say a big ole’ fat “I told you so!” Oh yay for me I was right, I was losing my hair and had plenty to be concerned about.

Eventually I got the diagnosis I feared the most, androgenetic alopecia aka female pattern baldness, and that was that. I think doctors should provide that diagnosis with a shot of tequila or something.  Hearing those words made me feel like downing the bottle of rubbing alcohol that sat on my doctor’s countertop, surprisingly I refrained.  It was a lot to process, I couldn’t understand how I went from just taking a birth control pill to a diagnosis of female pattern baldness. Well, it just so happens that for women who have a genetic predisposition to androgenetic alopecia, the birth control pill can (doesn’t mean it will, but it can) flip on that genetic switch early.

With my balloon of hope of having some type of treatable and explainable diagnosis being popped, I was left deflated and in shambles. The only thing I could do was to treat it, and I surely wasn’t going to go down without a fight, so I decided to have a run at it and used Rogaine, Propecia, Saw Palmetto, Aldactone and Ortho Tri-Cyclen.  Yes, while the birth control pill can cause hair loss, it’s also used to treat it. I definitely wasn’t happy about getting back on any pill considering what it had done to me, but I was desperate to stop my hair loss.

Unfortunately, even with my litany of treatments my hair kept falling out and with each lost strand, I lost a piece of myself. I started to withdraw more and more from the world around me, I really became a hermit. It was a trying effort to do the simplest tasks like grocery shopping or going to the movies. I was depressed, lost and beyond sadness. I felt like it was just me out there dealing with this, the chosen unlucky one who was seemingly the victim of a cruel joke of Mother Nature. Bless me with such amazing hair, and then take it away at the snap of a birth control pack. It was extremely hard to cope with. My fiancé is amazing, he was with me every step of the way and did everything he could to help me, but I still felt depressed and lost.

When I looked online I didn’t find any other women “like me.”  It was frustrating and isolating to say the least. My 30’s were around the corner and I woke up one day realizing I had missed my entire 20’s, it was a blur of heartache and depression all pressed together in snapshots of crying tantrums and hopelessness.

The Birth of The Women’s Hair Loss Project

In August 2007 I found myself in one of the darkest places I had been in the entire time I had been dealing with my hair loss. I just didn’t know how to continue dealing with life anymore, and I didn’t see a future for myself in doing anything. I simply loathed my existence.

In a fit of utter despair, most likely after having a mascara streamed crying spell, I decided I would make a public journal of my life dealing with hair loss as a young woman. I decided early on to write completely anonymously, without a face and without a name, because I always feared that others who knew me would find my site and my hidden life would be exposed for all to see.

I was certain that maintaining my anonymity was definitely the only way I could be 100% honest in sharing my life dealing with hair loss. My plan was just to write what I felt, and hope maybe it would reach someone else that was going through the same thing.  And so it began, I started typing and posting away, really just having a conversation with myself, it was just a journal. I wrote and wrote and eventually one day someone wrote back. I still remember where I was at that exact moment I got the notification that a comment was left on one of my blog posts, it was a point of change and a new beginning. It’s like discovering you have a twin in the world you’ve never met… well not really, but you get the idea. It’s the realization that you are not alone anymore, there IS someone else the gets you and what you are going through, they can intimately relate in a manner that someone who isn’t going through this, cannot.  One visitor turned into two and then three and it just grew from there.

The following year, January 2008, I began The Women’s Hair Loss Project Network, which is essentially a social network for women to set up profile pages, share blogs and photos and interact with each other on a more intimate level that extended beyond just connecting on my blog.  Shortly after I further extended the site to include a “forum” for women who didn’t want to set up a profile, but preferred the simplicity and ease of a message board type format. It was all about communication and providing every avenue possible to enable women to reach out to one another.

I had truly underestimated how important, powerful and healing having that connection with other women would be, not just for me but for all the other women out there who where going through all the same things I was, but having no way to reach out or connect with others. It changed my life (for the better) and I know it’s impacted the lives of an extraordinary large number of women who throughout the years who passed through The Women’s Hair Loss Project and found help and support when they needed it most.

This past May, after having gotten the strength from seeing so many WHLP members moving on to wearing hair, and moving on with their lives, I decided I was ready to make that leap for myself.  As with everything else I do regarding my hair loss life, I posted the entire way through. Through the tears and frustration to the realization that wearing hair is superbly awesome. I wasn’t able to save my hair, lord knows I prayed hard enough, but it wasn’t meant to be. It’s been healing for me to know that through my struggle I’ve been able to provide something to other women, a place to get support and understanding and a place for hope and friendships.

Moving Forward & Looking Up – The Future of The WHLP

The future of the Women’s Hair Loss Project is bright, because I’m feeling much brighter nowadays myself J As a result I’m willing to share much more of myself in photos and videos which I know is so important for women that are new to hair loss, and those that have been dealing with it for years. Why is a picture worth a thousand words? Because myphotos now show me living and wearing my wigs, which I so frequently refer to as “my girls.” It shows life after hair loss. If I can get through this, anyone can. I hit rock bottom really hard, and I came back and joined the land of the living.  Hundreds of thousands of women are doing the same.

This type of media provides the visual representation and realization that if all goes to hell in a hand basket that you don’t have to go out into the world with thinning hair or being bald if you choose not to, plenty of women do choose to shave their heads and look amazing, I’m more of a hair wearing gal myself.  Options, options.

In going forward I also hope to expand The WHLP to include a strong core group of female bloggers who can help and provide a greater expanded viewpoint, knowledge and expertise to the women who visit the site, so they get the best information available today. Knowledge is power and I want women to be armed with it.

It’s been 5 years since the start of The WHLP, and I think it’s very safe to say; we’re not alone in this fight against hair loss and learning to live with it. My hair loss has been one of life’s greatest teachers for me; I know I am a better person for going through this. It certainly has allowed me to see the world through different eyes.

I don’t think I’m an expert in hair loss, I’m not a doctor, I think my expertise is in living with hair loss, learning to cope, and learning to adapt. Letting go of “why me?” and then asking “why not me?” and accepting that life simply isn’t always fair. We may not get to choose what happens to us, but we do get to choose what we do with it, and how we will react to it. We choose whether we will let it takes us down, as I did for over a decade, or whether we will strive to be better because of it.  As Morgan Freeman said in the movie Shawshank Redemption, “get busy living, or get busy dying.”  I always loved that quote. I lived a dead life for over a decade and that’s time I’ll never get back.  This moment, this second, that’s all we have, tomorrow isn’t guaranteed for any of us, so lets get busy living.

Much Love To All
~Y

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