My Introduction and Alopecia Journey – Mary’s Hair Loss Story

My Introduction and Alopecia Journey – Mary’s Hair Loss Story

Hi everyone,

I’ve just joined and I want to share my alopecia journey with you. This may be longer than it’s supposed to be, but I hope my experiences will help someone. If you want to put a face and voice to this narrative, please check out my YouTube video entitled “Alternatives to wearing a wig”.

I had patchy alopecia for 7 years, beginning out of the blue in my late forties. The round spots were always confined to the back or sides of my head, and were easily hidden under my thick brown hair. The frequency of the spots increased in the last few years, but they always filled in after monthly cortisone injections. My daily routine was checking my scalp in the mirror for new spots and for the status of old ones, and applying cortisone cream. I always worried about the spots moving to places on my head that would show. But, after so many years, I also sort of figured I’d never lose all my hair. Wrong.

Exactly a year ago, my hair loss began to rapidly progress. New spots appeared on top where there had never been any; old ones enlarged to take up most of my scalp and merged with others. I obsessed about losing it all, and was often depressed and crying. By January 2008, I had as much bare scalp as I had hair, and the bald areas were too extensive for cortisone injections. We took some final photos the night before I shaved my head on January 30, 2008. I saved some pieces of my hair. The photo you see was taken right after my head was shaved, and still shows stubble and my real eyebrows and lashes. I have no eye makeup on in this photo; my eyes were dark and my eyebrows very distinctive.

I felt better immediately! No more scooping up hair from the floor every day. No more examining my head to check the bald areas. No more crying over the spreading bald spots. And, it was much more comfortable under a wig or scarf than when I had the patches of hair. Shaving it all off gave me a feeling of control.

Via a local support group, I heard about a casting call for “Shear Genius” on Bravo, and was one of 8 bald women with alopecia featured on an episode that was filmed the end of March. At the taping, I still had my eyebrows and lashes, but they were gone by mid-April. The show aired July 23, and many times after that. (You can see the whole episode on YouTube under “Shear Genius 2 Episode 5″.) It was a great experience meeting the other women, all of whom had been bald for many years. I’ll probably never wear the wig from the show – way too heavy and thick, and I picked a color that wasn’t a good choice.

Shortly after the show taping, I got very depressed again when I lost my brows and lashes, and would wake up looking so blank. I felt like I had disappeared. The daily makeup was a pain (especially since I’ve never worn makeup), and then it would just come off during the day. I had my eyebrows and eyeliner tattooed (permanent makeup) in April and June, and though my eyes don’t look like they did before, I’m very happy I did it. Having the tattoos is so easy, and I am now used to the different way I look. You can see the difference between the photo posted here (which is how I looked on Shear Genius), and the way I look in my recent YouTube video. I don’t have to put any eye make-up on now, except for some shadow when I want to be more dramatic.

After I shaved, the patches of scalp hair got smaller and smaller – an interesting flip side of watching the bald spots expand last year. I no longer needed to shave my head after June, and noticed that all my other body hair was gone, too. I like no longer having to bleach or wax my upper lip, and I love having smooth legs and underarms all the time without shaving! I’m now smooth all over.

I wore a wig at the beginning, but I HATE them and pretty much just go bald or wear a scarf at this point. I wear a wig for “dress-up” and only if it’s air-conditioned, cool, and I’m not being physically active. I can’t stand the heat under a wig, and the scratchiness. I developed a way of wearing a type of scarf from Turkey, and find them so much more comfortable than a wig! I teach a weekly folk dance class bald. I go everywhere bald – the gym, the department store, the library, the grocery store….and it gets easier all the time. I carry a scarf in my purse in case I get chilly, and wear a hat to protect my face and tattooed eyes from the sun. No matter where I am, if I get warm, the scarf (or on rare occasions, the wig) comes off! I have multiple “looks” and comfort is my key.

I made the YouTube video and posted it August 1, 2008 to share my scarf solution, and to share my feelings about going bald in public. I wish so much that more bald women would try it.

There are so many men with shaved heads in public, and no one gives them a second look or asks them what stage of chemotherapy they’re at! Can you imagine a man wearing a full wig on a warm day or while exercising? Not very likely. I don’t understand why women should have to do so. Think about how it would be if more women just went “AU naturale”. I have yet to run into a proudly bald women in public, but it will be a happy day for me when I do!

IN SUMMARY

It’s taken me most of this year, and I still get sad and angry at times because of my hair loss. But, I have come to a point of acceptance that this is the “new me”. I don’t even think about my hair growing back…I assume it won’t and that this is the way I will always be. I’ve gone from thinking that losing my hair and eyebrows would be the worst thing in the world, to realizing that I’m still ME. I’m thankful that I’m healthy and able to do everything I want to do. My husband and my friends love and support me whether I’m bald, in a scarf, or in a wig.

I refuse to spend the rest of my life hiding my head and being physically uncomfortable. I’ve bought a bunch of earrings to enhance my appearance and feel feminine even when bald. I hold up my head, smile, and go on with my life. Once I let go of caring if people knew I don’t have any hair, IT DIDN’T MATTER! My two mottos are: “Life is too short to wear a wig” and, (my statement to people who notice my head): “Yes, I’m bald…get over it!” I’m thinking of making some T-shirts with these.

I hope this is helpful to someone – I wish I could have read it a year ago. Best wishes to all of you who are struggling with this.

-Mary

Mary,Thank you so much for sharing your story!!! If you also would like to share your story, send it hairlossexpertt@gmail.com

My Story by, Ellen, 17 Years Old

My Story by, Ellen, 17 Years Old

June 14th 2004. I bet I know what you’re thinking. “That’s when her hair started falling out” Right? Nope. That’s when I had my ability to walk taken away from me. It was a normal day, and I was training for a big national competition in Australia with my horse. I had been riding for 10 years before that day, and falling off was just another thing. No big deal. I had heard that you had a 2% chance of something going horribly wrong if you fell off a horse, and I’d never come away with anything more then a couple of bruises and some sore muscles until that day. I was now a paraplegic. Being faced with the fact that I would never walk again. Ever. That I would be completely dependant on a wheelchair for the rest of my life and have to learn all over again to do simple tasks like looking after myself. It was hard. Very hard. But not the hardest thing I’ve experienced.

Just before my 16th birthday, my hair began to fall out. Very slowly at first, just a few more stands then normal. But in the next week it became more and more noticeable. There would be hair on my pillow, in my sheets, stuck on my clothes, on the lounge, in the shower, absolutely everywhere. Handfuls of hair would painlessly and effortlessly come out just running my fingers through my hair. I used to sit on the bottom of the shower in shock, as I watched my hair run loose with the stream of water and watch the water rise as the hair covered the drain. I was petrified of brushing my hair. I wanted to keep the small amount of hair that I had left. I felt so ugly, so alone, like such a freak. I was a girl! A YOUNG girl. And here I was holding my hair in my hands crying and hoping to God that this was just a horrible, nasty dream.

But it wasn’t. It was real, and after a while I decided it had to go. I was sick of the torment of showers and having to brush knots out of my hair and end up brushing out hundreds of strands, having it cover the entire house and having no control over it. So I decided to shave my remaining hair off to raise money for the Leukemia Foundation of Australia. And you know what? I felt so much better. I felt in control for the first time in months, and it actually looked a lot better then the patchy hair I had left. A few months later I decided to start wheelchair sports, and immediately fell in love with track and road. I always wore my wig under my helmet and boy was it uncomfortable. Keep in mind that it gets to about 42 degrees celcius here in summer.

I met my boyfriend through my squad, and he has been my modern day knight in shining armor. He helped me see that there was nothing wrong with not having hair, and that it didn’t change me as a person. That it was only an aesthetic. I was still me, I just looked different. It was one of the hardest things when I first met him to tell him that I didn’t have any hair and that I wore a wig. I thought he would see me as a freak for wearing a wig or that I was ugly and diseased and tell everyone. But he didn’t. He actually didn’t care which was quite concerning for me. But he has been so supportive throughout my whole experience with Alopecia Totalis. After a month I even stopped wearing my wig to training.

I remember pulling up to the track and thought my heart was going to jump through my chest. I was so scared. I thought they would pull off my bandanna or question me, but no one really cared. It didn’t matter to them, and I think it’s helped me so much being around others in wheelchairs, because appearance don’t matter as much to us. We all have scars, some with disfigurement, missing limbs, burns etc. We can all see we’re the same person even if we look different; we just have a different shell so to speak.

I know what you’re thinking. How could losing your hair be harder then never being able to walk again? Because so many people see long, flowing locks of hair as a definition of beauty, femininity, and sexiness. So many people express their identity and personality through hair length, style and color. It’s like losing a part of you. But it’s really not. It’s just hair. You’re still you. You’re still beautiful, and so many people admire your strength and courage for your strength in adversity. It really isn’t that bad once you see that there is nothing wrong with the way you look. And what is sexiness anyway? A tall, thin woman with beautiful long hair? I think not. Sexiness to me is a girl or woman who feels 100% comfortable with herself. Someone who knows she’s beautiful. Who smiles all the time because she feels great.

Look on the bright side. You get to sleep in longer because you don’t have to spend FOREVER styling your hair, your showers are quick because you don’t have to shampoo and condition and you save money on hair dye, hair dressers, gels, waxes, hair sprays, brushes etc.

You’re still you, and you’re even more beautiful then you were before.

------------------------------------------------------------------------------------------

Ellen, Thank you so much for sharing your story!!! If you also would like to share your story, send it hairlossexpertt@gmail.com