Replies to This Discussion

Permalink Reply by Children's Alopecia Project on November 4, 2008 at 4:13pm

It is a very scary question to answer. It's like if your wife ask's, "Do I look fat in this?" The thing I do is stay honest. If she wants to know something, like if a bald spot is showing, I will tell her. If I see the spot, I will tell her. Like if she had food on her lip or a booger hanging out.

I always tell her I love her no matter what and I discourage seeking treatments because all for
ms of Alopecia is incurable and it's an autoimmune disease. You can fool the body for just so long until it finds a way to get at the hair. Betsy will get cortisone shots that will grow back in 2 months but other spots will pop up.

My daughter on the other hand has Universalis and has not had hair on her entire body for 5 years since she was 5 years old and she is cool with it and never wears a wig or hat.

Not to sound corny but alopecia worlds catch phrase says it all, "acceptance is all there is".

Jeff Woytovich, Founder
www.childrensalopeciaproject.org

Permalink Reply by Phillip (Flip) Miller on December 11, 2008 at 1:00pm

My girlfriend Carol has asked me to make my friemds and co-workers aware of her Alopecia Universalis so that "she doesn't have to." While I have no problem whatsoever in doing this with my family, friends and people that are close to me, I do not believe that anyone who has not met Carol needs to know. This has caused some minor friction at times, as she would prefer that I tell people. Any suggestions?

Permalink Reply by Phillip (Flip) Miller on January 14, 2009 at 10:04am

Sorry it took me a while to respond to this, but I want to thank you for taking the time to compose such a thoughful, articulate response. This litlle "issue" of ours seems to be self-correcting, as time passes, in nature. The longer we are together, the more people that are important in our world, have gotten to know Carol.. I do not have a problem with Carols' Alopecia, it was always a matter of my wanting people to see her for the wonderful woman that she is, and not to associate her with any label or condition!

Permalink Reply by John Ford on July 25, 2009 at 8:25pm

As opinions, done with respect is fine; also if you're aware that the path your significant is taking is beatin'em up - you're obliged to speak to them of alternatives... not request, demand, insist or nag... make sure you articulate exactly where you're coming from and remind them you'll always support the decision that is theirs and theirs alone to make... and dammit, kiss'em a lot while you're at it - can't hurt...

Permalink Reply by rj, Co-founder on July 25, 2009 at 8:50pm

John, I wholeheartedly agree: Tact is the key. ;-)

Permalink Reply by MiNAH on February 3, 2010 at 8:38am

My dad and step mom have major issues about my baldness.
I walk bald and shave what "LITTLE MESS" I have left!

I find that it is others who have the issue...not I.
Their insecurity...not mine.
I know that no matter how many years go by, my father always has been embarrassed with my hair loss.
To friends, he is always excusing and apologizing for his lack of acceptance.
My dad asked me, "WHEN ARE YOU GOING TO COVER UP WITH A WIG, OR GROW IT"
ALSO HE SAID..."MAKE YOURSELF PRESENTABLE, AND ATTRACTIVE"
Put on a Wig and Look like a real woman, I was told by my step mom.
As I mentioned in another blog comment.
My Estranged Husband, told me to grow my hair and not to talk about it.
He was sick of the hair issue and says there is nothing wrong with my hair loss.
Wear a comb over!
Was fuming that I shaved my head and didn't mind me looking half balding, with my scull shining through on top.
Wouldn't feel comfortable walking next to me!
My brother told me that people must think I'm sick in the head for going without head covering, and when I shaved, he said..."THAT'S BETTER..YOU DON'T HAVE THAT UGLY COMB OVER"
Then, when he saw me again recently...he was insulting that I shaved it again.
Why aren't you growing it he asked?
From people who have never seen me with hair, I get
"YOU WOULDN'T LOOK GOOD WITH HAIR "
Or you get..."YOU WOULDN'T SUIT HAIR"
Or..."I CAN'T IMAGINE YOU WITH HAIR"
Hahhhhhh. and I sigh, thinking, "OH, WHEN WILL THIS EVER END"
Never!
So I move on and "WEATHER THE STORM"
I think that, the last laugh is on those who pass judgment!

Permalink Reply by Chris P. on June 15, 2010 at 6:12am

Hi MiNAH,
I just discovered this discussion yesterday and like Craig I’m a bit shocked about the terrible experiences you have made and the lack of support especially from your family and - even more - from your husband.
First and foremost it is you who should feel comfortable. Your family and friends should accept, support and encourage you and your decision.
However, it’s great to read about your attitude and that you are doing it “your way” nonetheless.

Permalink Reply by Diego Martínez on February 8, 2010 at 10:05pm

Hello, it is my first post. I believe as man that if I want that a woman notices in my though my hair loses also the men we must fix ourselves in women with alopecia, patches or that shave the head. I had a relation with a girl who was remaining bald, and between the two we decide that the head should shave for more comfort. She was verypretty and happy with her new look and was not taking wig. I also shave the head to give her support. To her parents not like this because they did not like that they were looking at her daughter of strange form, and ultimately through the fault of her parents she end with me. She continues shaving the head but she takes wig.
Still we are friends, but fodder that if his her parents had accepted her daughter as her like to be and not put into our lives, now even be couple.
I Show alopecia world to her but she did not want to create her profile. She change through the fault of his her parents. Before it was important for her to be neither patch nor that saw her, even start to accepting it and she to like it, and now she never goes out of house without wig, at least she dares to go to the beach. Both boyfriends that she has had despues have broken with her on having discovered that she is bald.
I find alopecia world casually looking for information for my current loss of hair, and I am glad very much to find this site.
Now I want to know nice girls who accept her alopecia and that of the others without noticing to the appearances, believe that this is the best thing to be nice with one same.
(sorry for my bad english, I´m spanish)

Permalink Reply by JimB on April 18, 2011 at 7:58pm

First and most important, men should support her, that even goes for women with no hair problems.

If you support her then she will be more excepting of her lack of hair and problems it presents.

As for the helping with her hairlessness ..... She should be the one to ask and men should be there to offer her assistance and support. To be seen with her no matter what she chooses to wear.

Opinions and preferences should be discussed together not seen as a problem for one and not the other.

In this case a man should be a follower not a leader ..... Let her make the decisions then just be there for her.

A big hint to the men, if she ask you to shave your head ..... Ask her to shave your head, do not got to someone else.



JimB