Alopecia World
www.alopeciaworld.com
At what point do you REALLY start to accept it?
I discovered my first spot just under a month ago. It grew large, fast. I shaved the underneath of my hair. The a week later I discovered a few smaller ones closer to the top of my head.
Last night, I thought maybe I might be imagining it, but could have sworn there was a small spot missing from my eyebrow.
Which I've just realised has doubled in size.
Yay!. Not!
Sh*t just got real then!
Has it been this quick for anyone else?
Aly
Replies to This Discussion
-
Permalink Reply by Dan Caster on
-
While I am old (now 72) and male, and it developed in 3-5 days just before and during a cruise to Alaska, ( I actually asked my wife why she was combing her hair over my sink, imagine that!) I am convinced that one's self image is not made of hair. It was easy to be young again with the bare head, what affected me more was the fingernails and what I had to do, to keep the nail beds from bleeding. Was working at the time, and really concerned about my appearance, which I still am.
Faith is something that despite what happens, one trusts that things happen for a reason. This is not the first of these, nor the last. First was cancer and it too, made me a more sensitive human being. I only hope that this is one of those that is a stand alone, though, I have had several other brushes with immune disorders. I don't want to push the Charismatic button, but whatever happens, have faith that a Gracious God has not given up on you, that you are more important than the Lilies of the field, and that the hairs that remain, are indeed numbered.
My prayer tonight is that you who are experiencing this plague (denoted blessing in disguise) will experience the Epiphany that awaits you.
Warm Thoughts,
Dan
-
Permalink Reply by PamFitros@boldlybaldwomen.com on
-
Dan,
I love your reply! I too started out with cancer - overian cancer and am very blessed to be among those few women who didn't have to have either chemo or radiation for a disease that is 75% fatal. I teasingly groused that I would never know what it would be like to be Mrs. Clean (the wife of a bald character in a cleaning product commercial who is completely bald and definitely well built - for an animated figure anyway.)
It was a couple of years later the alopecia universalis hit and I lost my job because I no longer fit the image my boss wanted to project for his office.
Long story short, I went home, licked my wounds and then got righteously angry. If men can polish up their heads and strut their stuff why can't we women?
So I sent out an invitation for women to share their stories in a book I later titled Boldly Bald Women and did my bit to change society's perception of bald women. And now I have learned it's not enough to write a book if nobody knows it's there so, at 64, I am entering deep into the inner workings of new technology and learning how to do podcasts and online interviews and create workshops for women about reclaiming their joy and outlining a series of e-books.
Who would have ever thought! But God isn't done with me yet. I am now so very grateful for having alopecia universalis. Without it I never would have met the amazing people I have come to know and love, or the new friends showing up every day looking for help. I am so blessed.
-
-
Hi Aly,
Everyone has a completely different experience (quickly, slowly, grows back or never grows back). I am 45 and I got my first bald spot when I was 25 and it seemed that way for some time (although it grew bigger) then it would grow back - only to have another spot show up & this kept happening continually all over my head in different areas and I was able to wear a hat (or in the warmer months I could wear a wide headband to cover most of the top of my scalp) but then at one point those spots never grew back & seemed to connect to each other and then that's when the AA took over. My hair did grow back ONCE (but not 100%) and that was it for me - it never happened again. In the beginning I did go to a dermatologist & got cortisone shots but even she said too many shots for too long will cause skin atrophy & the hair won't grow back again in that area. So once the AA took over I didn't even bother to try any more and shaved off what little I did have. Only a year or so ago I started losing my eyebrows as well (slowly) but now they are completely gone (I just pray I don't lose my eyelashes!) . I resigned myself to the fact that I have AA & only most of my family & closest friends really know. I have been wearing wigs for at least 10+ years now... and I get more compliments on "my HAIR" - it's actually pretty funny. At home I wear a head wrap/or scarf. I don't know if/when I would be brave enough to go out without a wig - but more power to those who do/can. You do whatever makes you feel more comfortable (wearing wigs or not.. going bald or not... ) what helps me to "accept it" is thinking that GOD FORBID I could be dealing with something way worse than AA. No one WANTS to have/get AA - but there are worse diseases/diagnosis out there and I guess that's the "silver lining" to it. I have friends/family who have had cancer & MS,.. AA is nothing compared. Take care & do what's right for you.
-
Permalink Reply by Aly on
-
I seriously love this group. You all shared deeply personal responses with me and I am super grateful for your honesty.
I know my journey has just started, my partner tells me to just live in the now, but I can't help but look forward to mentally prepare myself for any scenario. So hard when it's so unpredictable. I know I should take one day at a time but AA has a mind of it's own!
You are all amazing!
Aly
-
-
As are you, Aly dear heart, as are you!
-
-
I have had this for 18 years. I never go anywhere except to bed without my wig. So I guess you'd say I will never accept it.
-
-
I'm going to be 100% honest with you all, as you have so boldly (good word that @PamFitros) done so with me.
Although I am freaking out, obsessively hunting for new spots (found one in each eyebrow tada!) and desperately rubbing all sorts of concoctions on my spots, I think I've kinda already accepted it.
I lost my beautiful dear mum when I was 16 to breast cancer. She had a full head of luxurious curly black hair, and watching that fall out and her utter despair during that time, I grieved with her at her perceived loss of identity. That was incredibly eye opening as a young teenage girl of then 14. She got over her initial grief, grew back a close crop of new hair but succumbed to that horrible illness within two years.
For me, that was and remains my greatest loss. Nothing will ever come close to the devastation of that incident in my life.
When my youngest son was diagnosed with Autism at aged 9, I was like 'meh', time to start reading so I can deal with this. Accept and move on. No biggie when comparing to other incidents in my life.
With my AA diagnosis its the same. Read up and become informed in order to deal. There was no question of me accepting it.
And, to all those that say stress is the trigger, well why the hell didn't I lose my hair at aged 14 when my mum was battling cancer and I was caring for her, or when she died, or when my son didn't sleep for longer than two hours for the first two years of his life, or when he was diagnosed with HFA, or when he has screamed at me during 15 years of meltdowns????????
No I'm sorry but stress hasn't been the trigger for my AA.
Now I'm just impatient. If its gonna fall out then get on with it. This in-between stage is making me OCD, I've NEVER looked in the mirror so much and so often lol.
Thanks for the ear!
Aly
x
-
-
Aimee,
My mum had a crappy wig, she hated it and preferred to wear head scarves. She never wore it again after she got off the bus one day and it blew off her head in a gust of wind. She had to chase the damn thing down the street and that was the last time we saw it.
If it gets to the point that I lose the lot, which in my gut feels like what is happening, then I think I will experiment with wigs when I go out and to work, but go commando or wear scarves at home. I know Ill shave it when I need to.
Thanks for sharing your similar story Aimee! xx
Aly
-
-
Hey Aly,
I was surprised at how people actually are far more compassionate towards these "incidents" like your mom's wig.
I was walking around the streets of Oakland, CA, when I saw a woman walking toward me. Perfect hair, and make up. I thought, wow! She's gorgeous! Well, the bay area is not a friend to wigs without Bobby pins.
Just as we came to an intersection, we had a trade wind. Her wig was in the air before she could blink! What was worse it flew right out into the middle of traffic. Without even thinking, both us ran out into the intersection trying to get her wig before someone might run it over.
Surprisingly, everyone stopped, so that we could get that wig.
I caught it before it went rolling into a nearby gutter, and handed it to her. She was so embarrassed, she couldn't even look at me. She mumbled a thank you, or an apology, I have no idea which - and took off running with her wig in hand. She didn't realize that to me? She looked even more beautiful without any hair at all.
I bet your mom was beautiful, too.
-
-
I love this reply, femmemuscle!
-
Permalink Reply by Lori Van Decker on
-
I think I started to accept it when I accepted the fact that it is out of my control. I've dealt with various forms and degrees of alopecia since 1971. Lots of practice. I've had AU since 1986. Once I learned to have fun with wigs, it became easier to work with. And on the bright side, I haven't had to deal with the menopausal mustache!
Yeah, we were dealt a tough hand, but it always amazes and inspires me when others who are dealt far worse survive and thrive. It is all within us to exploit what we can control and work within the constraints of what we cannot.
© 2024 Created by Alopecia World.
Powered by
