Replies to This Discussion

Permalink Reply by Mary on October 15, 2014 at 8:11am

I don't know which are the top 3 things...but I think the worst is not knowing how bad it is going to get, i.e. how much hair I will lose.  I have FFA so my eyebrows are significantly affected and also the hair at my temples & sides.  Right now I can cover up most of it but the doctor says what is lost will never be able to grow back.  He said that sometimes FFA just "burns itself out" so the biggest challenge for me right now is fear of the unknown & uncertainty.

Permalink Reply by PamFitros@boldlybaldwomen.com on October 15, 2014 at 10:16am

Thank you Mary, that uncertainty and fear of the unknown is something I am sure most of us can identify with. I think it is exacerbated by the fact that even the doctors can't reliably predict the direction or degree of hair loss ahead. And the higher the uncertainty, the higher the stress level we feel. We know stress isn't the cause of Alopecia, but it can trigger hair loss. And reducing stress in the middle of uncertainty can be really difficult.

Would learning methods of stress reduction be something that would be helpful to you in your struggle with alopecia?

Permalink Reply by Jo S on October 17, 2014 at 1:15am

I have become semi obsessed with this annoying condition. I desperately want to know how bad it's going to get. ( currently I have lost about 80% of my hair ) I have a love hate relationship with my wig. (Suzanne) I read and I read and I read, I'm looking for answers, answers as to why it's here with me, answers on how to get my hair back for good.
I read about others shaving their heads and feeling good afterwards, they're right, it feels great.
I miss my own hair though.
But it's ok really.

Permalink Reply by PamFitros@boldlybaldwomen.com on October 17, 2014 at 11:50am

Jo,

You and Mary have both touched on huge pain points - how bad will it get, how do I get my hair back for good and how do I cope with the anxiety of uncertainty.

The best way I can address your concerns is with a registered copyright excerpt from Boldly Bald Women:

Chapter 10

Yes, I Have No Hair Today...Maybe

You have to accept whatever comes and the only important thing is that you meet it with courage and with the best that you have to give.                 - Eleanor Rosevelt

"This morning I made a cup of coffee, padded to the bathroom to shower, and sand happily as the water bounced off my bald head. When I'd finished showering, while brushing my teeth, I noticed a few blemishes on my face.

Looking closer, the front lighting of the mirror and the back lighting of the sun through the outside window merger, catching patches of colorless strands on my face where the breakouts were. HAIR! Not the fine, short downy hair that used to cover my face, but straggly goat beard hairs - the ones that had you grabbing for the tweezers back when hair was not a novelty. But these hairs looked confused. They were the non-color of clear fishing line and had no sense of uniformity at all!

The more I looked the more astounded I became. Nope, no nose hair, but there were ridges growing along the outside edges of my ears like transparent pine trees storming the heights of a barren mountainside. No eyebrows, but a patch of hair wannabes at the nape of my neck.

This has happened before. In the past all the new hair quickly fell out again leaving me once more smooth as a baby's but and blemish free. What will happen this time?

Alopecia is fickle. If you let it, it will indifferently drive you crazy. Just when you've given up all hope, hair will grow back, stay for a while, or maybe forever, and fall out someplace else - or not. And when you've finally dared to breathe a sigh of relief because it's all grown back and taken up permanent residence, whole communities just disappear, leaving bare patches of scalp behind like abandoned campsites. Or it may all leave en mass, and you stand looking in the mirror as a totally new personal landscape, trying to see if you are still in there somewhere.

One of the difficult aspects of alopecia is that you don't get to grieve a loss, adjust to a change in you self-concept and physical appearance, and then move on with your life. It keeps you off balance and feeds both false hope and unfounded despair again, and again, and again, until the only thing you know for sure is nothing is for sure. And that certainty of uncertainty is called acceptance. It's a good place to be, and it's a hard place to remain centered.

For today, I feel okay about this new development, although honestly, I hope the little buggers decide to leave sooner rather than later. I've grown fond of my smooth skin and shining head."

~~~~~~~~~~~~~~

The chapter goes on with more stories from the twenty five women from Alopecia World who shared their stories to help women struggling with the emotional and social impacts of hair loss. But this small sample gives you a taste of the flavor of the unpredictability of alopecia and why it is so important to get beyond the anxiety to reclaim your joy. I hope you find it helpful.

If you are interested in receiving a free download of the article "Getting Past the Pain - Three Things You Need to Know, please click here to register for instant access.

Pam

Permalink Reply by Jo S on October 21, 2014 at 6:15am

Thanks Pam, I appreciate your help, I'll read the article for sure. Really it depends on my daily mood as to how I feel about it all and like I said earlier, it's ok. Jo

Permalink Reply by PamFitros@boldlybaldwomen.com on October 21, 2014 at 12:05pm

I so get that Jo - btw I was singing in the shower rather than sand-ing. Oh well...best laid plans often go awry, lol.

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