Comment by Tuesday on March 7, 2014 at 6:05pm

" I want to not worry about wearing a hat or wig. I want my alopecia to be ok for everyone and stop trying to make everyone feel less awkward or better about it."   Exactly. I know exactly how you feel.  I have AU and it happened in a span of a few weeks several years ago.   I have more to say on this subject when I have a bit more time but I wanted to say - set a actual goal of projecting the appearance and attitude you want.  You radiant happiness, confidence, you radiant health - screw the hair. You're awesome (sorry, I cant think of better adjectives - shades of The Lego Movie!).    I think people rarely get it right when offering support.   So, I would just focus on projecting confidence. Fake it.  Fake it . Fake it.   I wear scarves when I feel like it - I am not yet comfortable bald. I actually get cold or sunburned so not really that interested in that option! But, I fake it when I feel anxiety. No one needs to know. And eventually the faking becomes real. You actually gain confidence. There are lots and lots of people out there who don't have alopecia but they do have hair loss issues. So, even when it feels like there are not a lot of people in the world with alopecia, there are certainly many who just dislike their thinning hair. So, we are not as alone as we think we are.   I try to remember too that most of us in the world have several "crosses to  bear"  . We all have sufferings and unimaginable events in our lives. So, when I'm out like I was today and my penciled eyebrows are becoming faded and I feel hot in my wig, I think, "oh, crap, everyone has some issue ".  I mean I have other issues besides my alopecia and I am sure you do too.   

I have a 7 year old and a 10 year old.  To be honest if they were "scared" of me going out without a wig, I 'd tell them to "deal with it".     If anything it's a good lesson in acceptance and compassion to learn to accept Mommy as she is.  I think you need to lead by example.  If you act like you are ashamed, they will feel the same way.  If you act like you kick butt and your wig is not a big deal, they will eventually follow that train of thought and behave accordingly.  I know you have the strength. You may not feel it yet, but, you do.   Really! :)

Comment by laura on March 7, 2014 at 7:57pm

Hi Marie,

 I have alopecia universalis totalis.  The course from all hair to nothing took about 6 months at age 52 and now 4 years later..  still no hair anywhere...  and probably never.    At 52 i was fit, size 10, took care of myself and had beautiful hair.   Now it is about confidence.  Alopecia is so unpredictable and in my case it is very predictable.  Be strong and do what makes YOU feel comfortable. When you are more comfortable with what works for you..  and confident to take the questions and looks  it works..

   My friends who say my wigs look great..  I ask if they want to borrow them.  try to have a sense of humor and do what makes you feel good.  Hat, wig, bald..  whatever..  i know you feel sad..  i do too missing my old self..  but it's one life we have and we have to go about it being wonderful with our choice of comfort.   Choose. smile and hold your head up high...  others around you will follow..  you are beautiful..  with or without hair....  and having no hair is "normal" for us..  we are a special breed..

keep checking this site..  hugs..

Comment by JannicaOlin on March 7, 2014 at 8:42pm

hi! I feel sad about this.... when it comes to daughter, I think you just need to talk to her, tell her that everything is ok and let her share what worries her. when it comes to your husband, if he doesn't accept you for who you are, because, let's face it, it's Alopecians know that our identity is not in our hair. it's not who you are. if your husband can't accept you especially when you have, then he might not be worth having in your life, more than being the father of your daughter. Of course I don't know all the facts and who am I to say anything......
you have nothing to hide or feel ashamed over.

Comment by Julie on March 7, 2014 at 10:30pm

I know exactly how you feel. I have only been coping with alopecia for almost a year. I am 32 and a single mom of 2 girls 8 and 10. They and my family have had a hard time coping. They try their best to be supportive but still have a hard time understanding. I shaved my head last June and very quickly became more comfortable as a bald woman then covering my head with a wig and feeling like an imposter. I want to create awareness and show others that a persons appearance is not what defines a person.

Comment by Dorothy on March 8, 2014 at 1:58am

I have AU, it developed as I was in the hospital after giving birth to our oldest.  With her I was always so afraid she would see me as a freak and reject me.  Call it what you want, me seeing the future of me making the future, I believe because of my attitude, that is exactly how she saw me and as soon as she was out of school, she moved out because she did not want her friends knowing I was a freak, her words. 

Our next two children came along much later, tho I still have my AU, I was not the neurotic parent about how my children might or might not be embarrassed to have ME as a mom. 

All the time my husband NEVER acted like I was anything but the person he fell in love with and always tried his hardest to show me he loved me no matter.  The entire 38 years we were together before he died, HE was my rock and he never thru it in my face, not once made me feel less.  I am certain without his support, I would still be crying my eyes out every night for every hair lost. 

What I am trying to say is you have to find a certain amount of comfortable with this disease, so does your husband.  I feel otherwise, how you feel will be how your child(ren) see you.

 I think how you act about your alopecia is what children pick up on and tend to either accept you and your alopecia or not depends on what your signals are, while I might not be as accepting as I might, but I sent different signals for these two. (I have a very wide spread between child one and children two and three, it was like raising two different families.)  If you feel like you must apologize for having this disease, then that would be admitting you did something wrong to get the disease.  We all should know by now, that simply is not the case, so what would we be sorry for?  I am comfortable to the point that I am who I am, I make no excuses.

Comment by maeva78 on March 8, 2014 at 5:08am

My 7 year old daughter has had as since she was 4 and I understand how you feel.. I really feel like I have to be the strong one here but I have my ups and downs... She is not at all worried about it... She is going thru a good phase but even through the worst ones she is always ok and it really got me when you said you have always been making everyone feel better about it...

Big hug from Spain

Comment by Mz Tracy on March 8, 2014 at 5:18am

I too wanted freedom from my wigs and hair pieces. I shaved my head from the puzzle pieces and wow what a relief!! My friend gain your freedom and at the same time respect from those that love you. You have to teach them by showing them how to accept you and that Beautiful Bald Head!
It's Beautiful because it's now the true authenticated YOU!! Be Free my Friend!!

Comment by Tovah on March 8, 2014 at 11:07am

Even though I've had alopecia since I was about 14, it had remained as just 'thin hair' until 6 months ago when it just really started FALLING OUT! I found it easier this time to JUST COME OUT. I had spent so much time and energy trying to cover up the bald spots, that I just found it easier to let people know what I'm dealing with. They're usually really understanding and not turned off in any way. Do I have my bad days? Absolutely,  I'm angry that I have to wear a hat or a wig or extensions, but it's absolutely easier on me now.

Comment by Kaylee Mitchell on March 8, 2014 at 12:12pm

I've had aa since I was 3 and for most of the time I didn't know why I had it or what it even was, I have a feeling that your daughter just doesn't understand everything you're going through since she's so young but will come around, I don't know anything about marriage but if he loves you he will support you in whatever you choose, be confident with yourself and what's not to love

Comment by Sara on March 8, 2014 at 9:31pm

It's funny...I have never had a problem "coming out" to my family and friends...I can't come out to myself:/ Also in my job...my co-workers and the public in general. I too do not know how to do that....I've been struggling for 2 and a half years since I developed AA which has recents turned into AU:( I have spent every last dime I have on "hair systems" I never let my BF see me without my "hair"! I can barley stand looking at myself without my hair on! I also have eyebrow "wigs" I'm a mess!!!! My psychiatrist tells me I must learn to cope with this, but I just can't find a way. Maybe I need more time...I applaud the women who are brave and strong..who can face the world the way they are! I just can't:/ This disease has destroyed my life...taken my identity my money my self esteem! It has robbed me of my life! Don't let it do that to you! Good luck my friend!!! Let us know how you do " coming out" :)

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