Comment

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 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 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 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 Matt on March 7, 2014 at 5:39pm

Totally relate. I am about 10% away from totalis. My head looks like a soccer ball of smooth and patches. My Daughter is 2 and doesn't seem to notice yet. At 5 I think yours is well capable of adjusting.
My wife is supportive but I don't think accepts that it might not come back. I always get asked if I'm in chemotherapy or sick. I hate trying to always wear hats, I workout almost daily and it's too hot.
I am hating the scalp injections more and more and don't think I can keep it up. They seem to slightly work but overall patchiness is made worse in the couple years I've been at it.

I am more frequently going hatless and just suffering the indignities that go with it.
U r right that men (your husband) are motivated by a woman's appearance, so I think it's def worth throwing on a wig sometimes for his and your relationships sake. I don't think it's mandatory all the time!

Comment by Marsha Lampert MBA MS on March 7, 2014 at 5:33pm

Marie,I am wondering why you seem to be afraid of wearing wigs. I too was a bit scared 4 yrs ago but decided wisely that there was nothing to be ashamed of or afraid of & ''dove in'' & found ''the water's fine''. Since Then

I wear wigs 24/7 including sleep/swimming etc. I am only wigless in the shower or tub.

Now I have over 50 wigs,& my wearing a different one each day/night is a non-issue. People in fact are complimentary & supportive,including my employer! I am open candid & proud of my being a 24/7 wig wearer

& easily disclose it even to strangers. I teach music lessons privately fulltime & study music professionally & perform all over the place & my students/teachers/musician colleagues have no problem with my wigs although no one knows from day to day what I will look like & which wig I am wearing. It could be almost any color other than gray,silver,white,salt/pepper,or carrot red, It could be long extra long short medium etc & it could be frosted or shag or curly or wavy or straight etc, I perceive my wigs as ''my new hair'' & love experimenting with barrettes clips bows ornaments hairbands etc, & I even swim laps. Almost all my wigs are custom sewing altered to fit my dwarf 17 or 19 inch head securely & have dermafix sewn in the caps so I never need wig tape ! My wigs stay on secure even when wet ! SOOOO Marie,try to follow ''in my footsteps'' & be proud upbeat positive & enjoy the awesome freedom & confidence of wigs MarshaLampert@aol.com Marsha Lampert MBA MS

Comment by Lucky on March 7, 2014 at 4:40pm

I now have alopecia for three years. At 56 I started with aa, then at and for over a year now I have au.

At first I wore hats, I took every medication and lotion and cream available for this condition. I even had the shots on my scalp.

I've worn hats, for like a year everyday. I then began buying wigs which I was tatally uncomfortable with. I din't like how I looked or how they felt.  It wasn't until I lost all my hair completely that I became brave, and decide I want my life to continue as normal as posible. I have children (girls) a husband and a job that I love.

I wanted to continue socializing with my friends, and I said shit, my hair does not define who I am, my heart does not wear hair and my brain does not wear hair, but I am a woman and we do like our hair, well when i had it.

I ordred a wig that yes cost some money, but it is the best. You don't need tape or glue and it is comfortable..It sticks to your head and it does not move or hurt.

I have since September and I have not taken it off since (just to wash and style) which i do myself just like when I had my own hair. All this to say, maybe you can wear one of these wigs and you will look great and like me forget the alopecia. You won't have to explain anymore,

Best to you and all with aa, at, au.......

Comment by Dena on March 7, 2014 at 4:19pm

I don't have Alopecia, but have a very beautiful daughter who has lost all hair, eyelashes, eyebrows, etc. When she first lost her hair, I probably did everything wrong in an attempt to help her. Not because I was ashamed of her, but I feared how people were going to react. So we tried all kinds of crazy treatments, I bought all the cute hats, headbands, and bandanas I could find, and even bought a wig for a 7 year old who never asked for one. I was always trying to compliment her on her new wig, hat, etc. and always made sure to remind her to grab her hat heading out the door. I was so scared of someone saying something that would leave her embarrassed or worse feeling like she wasn't beautiful. I was an emotional wreck and just wanted to get to the point where it wasn't constantly on my mind. Anytime someone noticed her cute little bald head the questions always started and made even a short trip to the grocery store into a conversation about her health and well being. I really just didn't want to talk about it and assumed it was bothering my daughter. I felt like when total strangers asked questions or gave advice, that they were invading our privacy to a certain extent. Funny thing is my daughter loves to tell people about her having Alopecia. I was so nervous I never noticed. Now I see she likes to impress people with her knowledge of Alopecia. Then one day we were goofing off taking pictures and she saw a picture of herself and said I should put it on facebook. That she thought she looked really pretty in it. It is my profile picture and she does look really pretty in it. It is probably one of the first pictures I took of her bald with no hat or headband. It dawn on me that she thought she was beautiful even though she was bald and she didn't feel the need to keep that from anyone. That was the day of our new normal. Now her bald head is normal and I honestly think she looks better without her wig. The wig looks natural, but it just doesn't look like my daughter normally does. Now we know we are going to be stopped in the store and people are going to be curious. It has taken some time to get use to, but I am at a point where I realize everything is going to be o.k. I honestly think even though I made mistakes they were done from a place of love. We were going through something so rare to most people that it was inevitable that I was going to make some mistakes with the way I was handling things. I say show them the new you and once they see you are confident and o.k. with things they will start to relax.

Comment by MarieCC on March 7, 2014 at 4:12pm

There is no need to come out when others knew that you had alopecia for many years.  Let me share my story. Maybe it will make a difference. I am Mediterranean therefore I have genes that allowed me to have locks of hair past my hips.  Well, I lost it all.  Yes, I was depressed for about four years and once in awhile it creeps into my mind when I look in the mirror.  People used to stop me to talk about my hair or touch it.  Well, one year, I decided that I did not want my only son to be afraid or ashamed of me in the company of friends because I had alopecia totalis.  So, I asked him questions directly.  We had a heart to heart talk about my condition.  He asked if he could touch my head and look closer.  I allowed him.  Within minutes he was crying and I too.  He said, Mom, your beautiful no matter what happened.  And, you have a really nice shaped head.  Its round and not knotty.  We laughed.  Then, he was frank.  He told me that his friends would ask continuously if I had cancer.  This would upset him.  The remote idea of his mom having cancer made him even more upset.  He found himself always talking about my alopecia.  Or some thought I had HIV. This too upset him.  Now, before people meet me, he tells them beforehand.  Simple and sweet.  My mom has Alopecia, an autoimmune disease that made her lose her hair.  Sometimes she wears a wig, a scarf or nothing.  I hope you don't mind.  In every instance, they love him even more for supporting and loving his mother.  Now regarding my husband.  It's sad to say that it did affect him more than my son.  He had an affair.  I was done with him after this.   But, something happened with greater reward.  He analyzed what part of me he loved the most.  He loved my smile, my eyes, my shape, my friendship, my ability to socialize and as he says, I can rock his world better than any twenty year old.  There were many times in the past that he never looked into my eyes when we made love.  After we made up, he cherished me.  He supports me.  He too went through much explaining what I had and it made him uncomfortable trying to explain.  He followed my son's example.  He says, I am with a woman that has Alopecia and I can't ever imagine being without her. She is a better person that I because she forgave me and always loved me.  Wow.....simply sharing truth, honesty and love.  What a concept.  Maria

Comment by Solange De Santis on March 7, 2014 at 4:09pm

Marie, I can only relate my own experience. The more confidence you express, the more people will accept the way YOU want to live. Your appearance is yours to control. No one else has the right to tell you how you should look. Check out some of the wonderful photos on this site of brave, beautiful, bold women who have the same interesting non-hairstyle. My decisions: I had my eyebrows tattooed because I have alopecia universalis and drawing them on every day was a pain; I always wear and have fun with earrings; I wear makeup including eyeliner to make up for no eyelashes; I don't wear false eyelashes since they are a huge pain. I have managed to lose 40 pounds on Weight Watchers and now I am a slim hair-free woman with a nice figure. Yesterday, a friend's 6-year-old son asked "why do you have no hair?" I simply said, "I have alopecia areata, an autoimmune condition that causes hair loss." "OK," he said. Best wishes.

• ‹ Previous
• 1
• 2
• 3
• Next ›
• Page