Alopecia World
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I am new and I need some help
Hi all. I am new here, and I came here in hope of getting some support for my wife. As my screen name suggests, I am married to a woman with Alopecia. As Im sure all of you on here that suffer from the same disease know that this disease can make life very difficult, and my wife is no exception. My wife has suffered from it for many years, but she has never came to terms with it. She is in denial of the disease and does not want to accept that it is part of who she is now. As a result of trying to escape from something she cant change, she tries really difficult to overcompensate. She wants to be the most beautiful, but it is a destructive lifestyle. She is obsessive about things like makeup and fashion all the time. She is very angry at celebrities or other women who get attention from the way they look. She is always filled with negativity and she has no way to stop it. I feel that most of her lifestyle is based on her just trying to escape from her loss of hair. My wife is beautiful, and smart, and talented, and there is no reason that this problem should ruin her life. I love her and try to support her as much as I can, but there is only so much that I can do for her alone. I believe probably the biggest reason why she has not been improving so much is because she has never associated with another person with the disease. I really think that she needs some support from others with the disease so she can feel better about herself. I read that it is the most effective therapy, and I know other people that had success with other kinds of support groups. I also have seen many users on this site that greatly benefit from being connecting with others with alopecia. She said she would join this site but she is always afraid to do it. But as her husband, I strongly feel she needs this kind of support so she can stop her destructive lifestyle and feel comfortable in her own skin. If all possible, I would greatly appreciate it if there were some users on here that welcomed her and encouraged her to come on here and talk about things she deals with. For now I will call her Eve because she was going to use that name, but she will introduce herself if my plan works and she comes on. I know my wife would be very happy if she was welcomed with open arms and could tell others how she feels. Thank you all for reading this and for those of you who respond.
-Mr. A (just for now)
-Mr. A (just for now)
Replies to This Discussion
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Permalink Reply by BR Horton on
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I will tell you like I see it,(however flawed it might be). I am a 37 YO male who just got alopecia. My beard went and then I had crop circles in my hair (2" in dia.) Now they are coming back. So I feel fortunate. But while coming to terms with it and thinking of how my wife should act and putting myself in her position I came to the realization that while I would be comfortable with it, it is a negative. It is not what anyone wants. But it is not the worst thing. My mom died of Leukemia when I was 14. I am sure she would rather had alopecia. That said, there are so many beautiful women with alopecia on this site. Just because they do not have hair or have minimal hair does not diminish the beauty they have. What will help your wife is acceptance and coming to terms with who she is. Then getting off the mat, recognizing where her positives are and accentuating them. Make them the best they can be. If it is here shape, make it better, if her bosom, deriere, her tummy, legs, eyes, or just her soul, make it the best it can be. Make it something that she has so much pride in that she does not even know/care she has hair issues. Help her. Get her clothes that help her, encourage her to dress stylish so she is proud, dress stylish with her and accentuate your positives. Make her proud of how foxy her husband is. You two are a team. Try not to say anything discouraging. My wife would blatantly cringe when we talked about shaving my head. I buzzed it and that is as far as she would let me go. I was embarrassed of my crop circles. My doctor said let the hair grow around it and it will cover it. Otherwise If I shave it, I will never know when it grows or not. I started the p90x and felt good about myself even with the circles. Just support her and it will work out.
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Permalink Reply by Marie on
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Hi! Here is my message to her:
By all means, Eve, come on in! This is the most supportive, wonderful group on the Internet. Even if all of my hair grew back tomorrow, I'd still be on this site. I can say in all honesty, however, that I no longer care whether my hair grows back; I feel better about myself than I ever have. Here is the place to find the positive, get beyond hair loss, feel beautiful, gain strength, and be encouraged to see the awesome woman within.
Alopecia is a difficult thing to experience. Since acquiring Alopecia, I have also become focused on fashion and other aspects of my appearance. (OMG, you should see what I spend on makeup!) And I can relate to feeling a little jealous of celebrities my age or older (I'm 51), who seem to be perpetually gorgeous/hot/young/desireable. But, there is only one path to happiness...love yourself. I know, it's cliche. I know, it's hard! But you are not alone. Join this group, meet the women here, make some friends, pour out your heart, learn to feel great again. Let's talk!!
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Permalink Reply by Theresa on
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An online support group is awesome, but if you're troubles escalate into marriage problems, you both may benefit from counseling. If I were in your position, or if I marry again someday and my spouse has issues, I'd patiently encourage them that I love them the way they are. I have had alopecia for all the years I can remember. I started to overcompensate to a degree, when my former husband left me - for women (plural) with hair. I've found a balance now. Knowing God's love for me is unconditional and he will never leave me nor forsake me, because of Jesus, I am able to be more balanced. You are both welcome here. I'm not often, I'm pretty busy in life, but my alopecia friends are kind and trustworthy.
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Permalink Reply by Shannon on
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Hey A,
I hope that your wife does join this site. For me, it was truly the pivotal point for change when I started associating (mostly via this group and a yahoo support group) with others who have alopecia. It was less than four years ago that I completely lost my hair and I can honestly say that I am a very happy, confident, beautiful person now. I hope your wife joins! She would also be welcome to e-mail me privately.
Best of luck.
Shannon
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Permalink Reply by edie1122 on
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Hi Mr. A and Eve,
Welcome! Of course we all love to say we have mastered Acceptance. For the most part, i have. But I don't minimize the feelings or thoughts of anyone who is stuggling......it will happen. Until then, please feel free to post, vent, worry and overcome with the rest of us!
Hope to hear from you both.
edie
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Permalink Reply by Tiffany Brosch on
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Is all I can say is that it takes time and the right person to tell her she is beautiful just the way she is! I have had it since I was 12 and I am now 29 and it took along time to realize it was never going to change! I still get aggravated with the women on tv, it is not right the way everyone objectifies that they are the most beautiful and the rest of us should bow down. I agree it really sucks to have to be bald but in the long run there are more important things like family job and her life! People on tv know nothing about the real world or real people we are not all perfect and that is what makes the world great! I work at the school in town and I am completly bald and I get questions and funny looks all day. But what makes my day is when the kids ask and really want to know! I awnser there wuestions and you know what they move on! I dont even think half of them see it anymore! The other day is class the kids realized my name had a short i in it and they had to draw a picture of something with short i and half of them drew me with hair. That made my day and made me realize it really is not what is on the out side that matters it is what is on the inside. As long as you care for yourself so will others! I hope my long story will help you and anyone else that reads it! HAve a great day! Tiffany :)
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All I can say after having this for 25 yrs, starting as a teenager, I can remember people saying to me,
It's only HAIR !! Well as you know, when you are watching it coming out, it's NOT just hair to you !!! If you
know what I mean...... Also, are you aware that there is 3 stages of Alopecia? There is Areata which is round
patches, then there is totalis which is the whole head, then Universalis the whole body. So , you might not be
dealing with the absolute worse or I should say the hardest to deal with. So there could still be a chance that your
hair would grow back.
Kym
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Permalink Reply by Joan on
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Hello Mr A and Mrs E. What a lucky lady you are to have such a caring husband. Mrs E I know exactly how you feel but tthe best thing is to talk about it. Easier said than done. I know that as well. I wonder what country you live in. Perhaps you could meet up with another sufferer. It could help. Do keep in touch with us all. We are all over the world and draw support from each one of us.
We really need to share a group hug and have lots of laughs. Think on the positive side. The money you save not having to spend money at the hairdressers,or not having to have your legs waxed. Many hairdressers wear wigs as they cant be bothered doing their own hair. You would never know. One hairdresser asked me where i went to have my frostings done.
I hope this has also helped you Mr A.
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Hello, Mr. A.
I, also am alone in my struggle, with no one locally to talk to, but while I have not actively posted on this site, I have been doing a lot of reading on it. I appreciate all the help it has provided. I am a woman with high visibility in my community and have always cared deeply about how I look. I am very fit and look young for my age, and am very healthy. I have worked hard all my life to stay fit. I love fashion. But there is nothing I can do about my hair loss. I have finally realized that there is a lot of help and support out there, and that with the help of wigs, a woman can look phenomenal-- Please tell your wife there are many of us out there, and she is not alone.
Linda
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Hello Linda. i also wonder where you live. I belong to a group in Australia and although we do not meet up very often I know if I need them they are always there.
As you say we are never alone
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Hi Joan,
Thank you for your note. I live in New England, U.S. Don't you wish there were more high profile women who come forward and reveal that they, too, share this problem? Statistically, there have to be. But if a woman is in a high profile position, especially in entertainment, she risks her livelihood by "coming out." Consequently those of us who need the support don't get it from that community. I am so glad to have found this website so I am not alone.
Take good care,
Laura
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Permalink Reply by George Blackwood on
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Hi Mr A
I can totally relate to your wife's story and heartache; I felt the same way, as did many others wi/ alopecia who've posted replies here; believe me, she and you are NOT alone; she is experiencing what many others feel as well, as you can see by comments responding to your post.
I have experience in talking and providing counseling to those with alopecia like your wife; and would be happy to chat over the phone with her is she would be willing to try this; albeit with a man one who was born with universalis and who has lived his 47yr life with no hair. Confidential of course ; NAAF trained me in counseling and I've completed University courses as well; I'm not a professional; just someone who knows exactly how she feels, and would be willing to listen to her story if she w/b comfortable doing so; I will promise that it will help her move forward is she'd like to have a chat. Regardless, your support, and that of those who've responded here, will go along way to helping her feel less isolated; for she really isn't, and that realization alone will make her feel much better and more accepting of herself and her alopecia,
Good luck! My ph no is (709) 697-4444
George (Blackwood)
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