It’s been a tough journey to this point

Hello everyone,

I just wanted to start out saying that you are really a bunch of beautiful people! With and without hair! I’ve been admiring you’re photo’s and reading your blogs, and I’m really drawn into you’re openness. I’m truly amazed by some of your willingness and creativity to try different things. Whether it’s baring it all, wigs, tattooing, etc… Just illustrates how ones true beauty is really not skin deep!

I truley appreciate reading everyone’s blogs. Especially the responses and experiences folks have had from family and friends. It’s really allowed me to “normalize” my thoughts and experiences.

I’ve been struggling with bouts of depression, anxiety and anger at people for the way they were making me feel.

Reading these entries over the past year has been a cathartic feeling for me and extremely beneficial and some what liberating. I find myself reading random ones a lot just to see what people’ thoughts are like. It’s kind of like a barometer of my own consciousness if that makes sense.

Thank you!

My turn… I'm finally admitting I have AU!

I’m currently 43 and I’ve been struggling with AA/AU my entire life. The past 30 years or so have been relatively easy to deal with as the hair loss was always concentrated to my limbs. Very rarely did I ever experience any loss on my head or face, and re-growth was almost always certain. I would just be patient and within a few weeks it was back.
I really can’t remember ever feeling anything negative as a child or adolescent or teen.
However, these past 2 years have just been a down hill experience.

I’ve lost the hair on 95% of my body, and approximately 65% of my head. One eyebrow, all my eyelashes and spots on my beard area are the latest casualties. People’s reactions to my hair loss have been mixed, close family has been supportive, other acquaintances and some “prior” friend’s responses have been detestable. I really can’t believe the amount of vile, negative things I’ve heard. I realize some are just poking fun, while others are really loathsome. Needless to say, I don’t speak to them any longer and avoid contact whenever possible

Over the past 20 year’s I’ve tried every concoction, medicine, or holistic treatment you could think of. Only result was making my wallet ever lighter and my hopes dissipate. All in all, I’ve yet to find the magic bullet as I’m sure the rest of you have experienced as well.

Last June*2009, I decided to shave my head and get my eyebrow’s tattooed. It’s been helpful but I’m still not happy with the results. As I feel “unnatural”. I can’t describe it eloquently, but I feel like a fraud. I wish I could just be myself.
Yet the negative comments I received from others were too overwhelming to deal with having “Just one eyebrow!

All in all, the biggest thing this condition has taught me is patience. I find myself being more tolerant of timelines and acceptance of slow change.

Hopefully 2010 will be a better year for us all!
Peace,
John

Views: 4

Comment by Ron Brown on January 26, 2010 at 8:35pm
Hi John,

Anyone who writes with such passion and openness cannot be a fraud. Tattooed eyebrows don’t make you a fraud. We all do what we can to look more ‘presentable’ to ourselves and to the ‘world’. I’m a 54 yr. old man who puts mascara on my ‘peach fuzz’ eyebrow every morning and pray I don’t forget to remove it at night or it ends up on my pillow the next morning… I have good days and not so good days like everyone here and elsewhere. I know first hand how frustrating it is to deal with ‘mean people’ but when this happens I tell myself they are just masking their insecurities by picking on someone else’s imperfections. I try to feel sorry for them instead of feeling sorry for myself…(it doesn’t always work) and if before I would ‘let them have it’, I now just smile and feel sorry for them. Almost like killing them with kindness…

Many people here commented on how AA made them stronger and it’s so true. Believe you are strong and you will be.

Hang in there..
Comment by Galena on January 26, 2010 at 8:56pm
I'm glad you're here John. There are different paths to acceptance and yours is just right for you. You made the necessary adjustments to help you handle your appearance. We all do what it takes to get over the hurdles of insecurity and self consciousness. You will continue to find phenomenal support here--at AW we are always here for one another.
~G
Comment by MiNAH on January 27, 2010 at 6:00am
I Just Love This Woman Susan....she knows what to say and when to say it.
Always giving me that extra boost when I feel down and out!
Thanks my dear friend...you are the "Queen of Awesomeness"
MiNAH
Comment by JeffreySF on January 27, 2010 at 4:25pm
Hi John,

Thanks for sharing.
I'm sorry you have had some negative experiences. We have a NAAF Support group in SF that you might want to attend and talk about your emotions.

Jeffrey
Comment by John on January 27, 2010 at 7:18pm
Thanks to all for the support... It means a bunch.
It still surprises me how cold people are.
The most hurtful was back in September/October time frame. A fellow socer coach at my daughters grade school said I was really scary looking and that I was freaking the kids out. It was the first time he had seen me since I shaved my head and grew a beard. He starred right at me and said " You look like a Child Molester!".
I could not believe what I heard. It made me sick to my stomach. I remember feeling as if I was hit over the head. I left her school that day feeling really bad for my daughter, as if people were wonder if she was being raised by a monster. I kept asking myself for a few days afterwards, do you look that bad? Sheesh... It took atleast a week to get that out of my head.

There's more! But I get upset thinking about it writing it...
Comment by Tiffany P on January 28, 2010 at 2:15pm
People can so thoughtless and cold hearted that it makes me sick, i am so sorry that he was so darn rude and frankly i would have had to shut him down at that point. but i know how sometimes people can catch you off guard, you think "wow did they really just say that?" well you take care of yourself and frankly i think you look handsome have a great weekend bye :o)
Comment by Cynthia Lee Watkins on January 28, 2010 at 3:04pm
Wow, John....hearing someone make a comment about a person with a condition they have no control over being a "child molester" makes me sick....I have to think on that one, and get back to you with a "snappy, put-them-in-their-place" comment.

In the meantime, my thoughts and prayers are with you.
Comment by MiNAH on January 29, 2010 at 9:03am

I know all too well how insensitive people can be. The worst, is when it comes from the people closest to you. I have endured so much criticism over the past months from my ex to be.
The insults about shaving for my prosthesis became so intense, so crude and so heartless.
He wouldn't even walk next to me on the street comfortably, as I go bald..."YES B-A-L-D"
He went on...and on...and on...and on "AND ON" that I should grow the bald patchy male pattern thin hairless look back.Which actually makes me look unclean, frumpy and I feel so insecure.
The bald top makes me look even more so, as one to be perceived as mentally sick in the head.
After all...it was my own brother who said some years back, when I only two patches on either side of my head near my ears and for the rest I had alopecia totalis at that time.
My brother told me...you can't blame people for thinking you're sick in the head, going without head covering.
My dad said just two days ago when I went to visit him...while sitting across from him in the living room..relaxing, enjoying the moment and company..."SO I THOUGHT".
Then my dad looks at me long and hard...sighing...hmmmm "WHEN ARE YOU GOING TO GROW YOUR HAIR?
Oh Anna....you can't walk like this forever...have you no shame...have you no pride.
Yes...I know you are a beautiful girl..."BUT YOU CAN'T GO ON WALKING THIS WAY"
"IT LOOKS LIKE THERE IS SOMETHING MENTALLY WRONG WITH YOU"
Nobody would walk bald like you.
Like I wrote in a blog answer the other day...my dad said to me for anyone who does not know.
"When are you going to grow your Hair...try and look presentable, make your self look attractive and either grow your hair...or put your wig on.
It's so easy for everyone to say...don't let it hurt you..you know your dad.
if the shoe was on the other foot...they too would feel that burden of insult and humiliation from family.
Friends are easier to ignore than the people who say they love you.
If the man you are married to has issues so deep about hair loss and didn't even ant to look at my Alopecia World page and friends...calling us all idiots.
I finally had the "BALLS TO LEAVE HIM"
Yes...it's hard...although it rings in my head about what idiots we all are.
I guess he's the "BIGGEST IDIOT" of them all.
I have some repair to do...as abuse over hair loss can be the extreme.
When they perceive and treat you otherwise different than other people.
I should have been wiser when I married him...the signs were there right from the beginning.
He said...I fooled him about my hair loss.
I met him without head covering so I can't see how I fooled him.
Anyways...he said that I needed to put on a wig to go to church or meet his family.
His family saw me with a wig a couple of months ago, advising me "don't ever go bald again, shaking her head...no, no, no, no, no...because the wig looks better. I don't know why all these years you have gone bald...you shouldn't do that...it doesn't look right.
I am so so very tired.
Yet as usual...I will bounce back and be my resilient self....as I have the "FIGHTING SPIRIT"
They haven't got to me..otherwise I would have worn a wig, conform due to perception, judgment and opinion all these years.
I wont!

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