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In Your Words: The Biggest Challenges Facing Women With Alopecia

Posted by Thea Chassin

April 16, 2014 at 9:00 AM

challenge-facing-women-with-alopecia
Thea Chassin and Yvonne King at BGDL
Phoenix, AZ 2013
I was diagnosed with alopecia areata universalis in 1997, and since the time I launched Bald Girls Do Lunch, I have been talking to women with alopecia virtually every day of my life. Unless you have gone through it yourself, it's extremely difficult to understand what it is like as a woman to lose your hair. That is also why I started Bald Girls Do Lunch. Women with alopecia need a women-centric support network to know that they are not alone. 

When women join our alopecia support network list, one of the questions they answer is:

What do you think are the biggest challenges in the daily lives of women with Alopecia Areata?

The answer to that question is so telling, especially since so many of the women filling out that form say they feel alone, yet there are literally hundreds of other women filling out the same form and giving a similar response.

I looked back at the answers to that question that came in throughout 2013 and noticed that most of them boiled down to a few categories. I want to share those categories and some responses with you, so hopefully you can see yourself in these words (perhaps some of them are your own) and know that there are women in the Bald Girls Do Lunch network just like you.

Women With Alopecia Struggle With Positivity and Confidence

I saw so many responses from women with alopecia whose biggest challenge is staying positive every day, and regaining the confidence they had before their hair loss.

Generating a positive outlook is the hardest thing for me. It starts from the very moment I wake up.

Feeling comfortable and confident in our own skin.

It still shocks me now sometimes to walk by a mirror at home and see myself.

How to build your self esteem back up after such a heavy hit of losing your hair. How to bounce back and be bold regardless of our hair. To be comfortable again in our skin and bald heads!

Living (for a lack of another word) A DOUBLE LIFE. What you look like "made up" and what you look like comfortable at home.

Worried What Others Will Think

Part of this struggle in confidence stems from worrying what others will think about your hair loss or baldness. With hair tied so closely to our looks, this is clearly a daily challenge for women with alopecia.

You lose something (hair) that you have had for as long as you can remember and then one day (for me it took a year) and it is mostly all gone.

I think just accepting yourself and being happy with who you really are inside and not focusing so much on the outside but let's face it..people judge on looks and it hurts.

Losing my hair was EXTREMLY TRAUMATIC. I was an emotional wreck. I didn't want to go out of my bedroom because I didn't want anyone to see me.

By far, the biggest concern I have is other people worrying that I have a serious illness.

Hair is a Part of Your Sexuality

From a very young age, girls are taught that their hair is an essential part of their beauty, and as we grow older it becomes vital to our sexuality. Without hair, how can we be attractive? I saw comments like this over and over again in explaining the biggest challenge in the lives of women with alopecia.

I had so much hair I wished I had less. As an American woman my hair is/was tied to my sexuality. It garnered me alot of attention. Between middle age and this I feel I am losing my sex appeal.

Trying to feel beautiful when hair is such a huge symbol of beauty for women.

Getting their "sexy" back.

I think dating is the biggest practical challenge for women with Alopecia Areata

I think the biggest challenge facing women with Alopecia is society and society's view of what is considered beautiful.

I've been told all of my life that your hair is your crowning glory and was devastated that I started losing my hair.

It's hard for me to see myself as attractive without hair.

Wig Worry

Many women look to hair prosthetics like human hair wigs to replace the hair they have lost. While this might give women a bit more confidence in their looks, it also adds new stress and concerns!

Now that I am back in the dating world, I am terrified that my wig may slip in public. Or I am constantly thinking is everyone looking at my hair and wondering if that is a wig. I could spot a wig a mile off when I didn't wear one myself and wonder if people still do.

For me it is the discomfort of wearing a wig and the feeling of being different.

Head accessories, for beach vacations or just working in the yard, that don't itch or look ridiculous

I use a hair piece and I am always worried that someone will notice.

Not being able to do certain things because of fear of losing ones wig or head covering

Trying to make sure my wig looks good so people don't know. Sometimes I get "the look" from strangers. It's the same look so when I see it I assume they know and I try to find a mirror to see if something is wrong with it.

For me it's trying to keep my wig (synthetic or human) looking like normal hair. AND the wind, always the WIND.

When I meet a man: when and how do I tell him about "the wig."

This is just a sampling of some of the most stirring answers to the question, What do you think are the biggest challenges in the daily lives of women with Alopecia Areata? There are nearly 300 women who took a moment in 2013 to add personal comments when contacting BGDL, all echoing similar sentiments.

It's imporant we all know we are not alone. You can join our list to find support in your area. You can attend a lunch near you. You can read the stories of other women with alopecia, just like you, living full lives.

But the most important thing to remember is that that if you are a woman with alopecia, you are not alone! 

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Topics: coping with alopecia, women living with alopecia