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

by admin on November 8, 2008

Written by Mary

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

To purchase the Turkish scarves seen in the video, send an email to Deniz Import & Export, turkishscarves@hotmail.com

Visit Mary in the network

Read her other posts:

The Top 10 Benefits of Alopecia Universalis
Where to buy the Turkish scarves shown in my video

{ 11 comments… read them below or add one }

sarah November 8, 2008 at 7:57 pm

Thank you so much for your post. I too am bald, I also do not have eyelashes or brows. I wrote my story about 4 years ago & seems like we have some similar thinking:) I wore a bandanna or baseball cap for years. I have gone in public bald before but do not do it often. I have tried to post on here before Im still learning so I hope your able to read my reply. I know everyone’s story on here is there own story & i know that even the ones who are only suffering from thining hair have their story but I thank you for being a bald beautiful woman for the word to see. I also think its great for the younger children with this disease to see woman like you. It gives them strength to be who they are not how people think they should be.

Angela November 9, 2008 at 5:06 am

Hi Sarah,

We definately need more bald and beautiful women in the world. Mary is such a great source of hope and strength for women going through hairloss.
Are you a part of the Women’s Hair Loss Project Network? If not, I would love to see you sign up and join this great community of women. Here is the link to the network:
http://community.womenshairlossproject.com

I hope to see you there and that you will start sharing your story too.

rachaeljean1 November 10, 2008 at 1:25 pm

Bravo Mary! My hat goes off to you. What an amazing inspiration you are to all of us. What a great story you have to share. Thank you for taking the time to share with us. It is a bright spot in my day today. Hugs, Rachaeljean1

Mary November 21, 2008 at 5:28 pm

Thank you all for your comments! It’s wonderful to hear from you.

If you’re not already familiar with Bald Girls Do Lunch, go to http://www.baldgirlsdolunch.org if you’d like to see photos of women at lunches all over the country – some bald, some wearing scarves or wigs. There’s going to be a lunch in San Diego in early January, and I’m looking forward to perhaps meeting some other bald gals. Attending a BGDL event here last January gave me the courage to shave my head a couple weeks after the lunch. Big hugs to all, Mary ( :-)

Cassandra February 8, 2009 at 2:35 am

Hi Mary,
I wish I were as brave as you. I’ve lost my hair too. I cry every single day. I wear wigs that I just hate. This has caused me some serious self esteem problems. Bravo to you Mary. Maybe one day, I’ll be as brave and happy as you are.

Carrie Jackson March 14, 2009 at 12:04 pm

I began losing my hair about ten years ago. At that time, I was taking Premarin, estrogen replacement. The loss of hair was very slow. For the past year, I have not been taking estrogen. The hair loss has increased dramatically. I am wondering if there could be a connection between the elimination of estrogen and the noticeable increase in hair loss.

Poesy May 20, 2011 at 2:17 pm

I just shaved my head a few days ago at the Cannes Film Festival for a project.
It brought me to do some research and I found your video which I will be sharing at my page.

Maybe you will be interested to see my project. Here is a youtube that explains things simpler.
http://www.facebook.com/video/video.php?v=1894848062519

You can go ahead and join the movement at http://www.facebook.com/BaldEmpathyMovement.
Do give us your support to advocate Objective #1 which I wrote to make baldness fashionable, cool and acceptable.

Yours, P

Ellen February 11, 2012 at 3:22 pm

I admire your courage, Mary. Thank you for sharing your experience and your tip about the Turkish scarves. My warmest wishes to you. Ellen

dan July 11, 2013 at 11:09 am

You look beautiful! Bald women are very attractive and exciting looking. I only wish I they were more visible so I could compliment them in person.

mark January 19, 2014 at 9:27 pm

I am trying to get as much info as possible as my son has Alypecia. I would like to know if any of you women get the flu shot on a yearly basis. I believe immunization is the culprit in some way on certain people. To many people with no known family history of autoimmune . DO you live by fracking wells as most company’s do not know how to test the water for the chemicals they are using. Do you swim is pools a lot as a friend has told me swimming makes his hair fall out. He see a lot of people telling their stories but know is giving history . The children’s hospital told us the flue shot has no part in this and i am now finding out they are lying about that. There has been reporting by medical journals that they are linked. I don’t believe everyone is just getting this disease and it is just life . . I call bull sht on that. Keep searching. And good luck ladies

Kathie August 10, 2014 at 6:08 pm

Dear Mary,
I have just recently lost all of my hair, eyebrows and eyelashes. I was wondering where you got your eyebrows tattooed because they look great.
I find myself hiding as I live in Florida and its very warm. I’m 55 and teach school. This is the first year that I might be teaching bald or with a scarf. My wig is really hot. thank-you so much for your video. I find myself getting very depressed.

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