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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 sirlene aparecida aarão on
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My dear, while I was reading your post I noticed that I have shared some of your wife's behaviour... Buying a lot of clothes, shoes, always thinking about appearance... when the real problem is, in fact, inside of us! I have all the experiences you want: AA, AT, AU (alopecia areata, alopecia total, alopecia universal) Everything started in 1992 when I was fired for the first time in my life. I had to use a wig from 1996 to 2000. But I NEVER gave up, never! I got my head hair back in the middle of 2000, when I "retired" my wig! From 2000 to 2008 I had some spots, but always treating... By the end of 2008 I had so many problems that my hair decided to "go away" one more time... Buying and wearing a wig one more time was really frustrating.BUT I started a new treatment: Hipnosis, Pilates and Diphencyprone therapy (DCP) (Remember that I live in Brazil!!!!!) I hope I can help you. My hair has grown back in just a few months, I had never had such an effective treatment before. Today I'm 44 and I have spent 17 years treating my alopecia problem. Everything I'm doing was suggested by my derm doctor.
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Permalink Reply by margaret smith on
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FIRST OF ALL SHE SHOULD BE SO HAPPY TO HAVE A WONDERFUL HUSBAND. IVE HAD ALOPECIA SINCE I WAS IN MY 30, IAM NOW 60. BUT I HAVE NEVER LOSTED ALL MY HAIR JUST THE TEMPLE. I DO THE WEAVE SOMTIME AND I WEAR A WIG SOMTIME. BUT YOU KNOW THIS HAVE NEVER GOTTEN ME DOWN. I WISH I HAD MY HAIR BUT I DONT WORRY ABOUT IT ONE BIT. I JUST SAY YOU KNOW IT COULD HAVE BEEN WORST. LIKE CANCER OR SOMETHING. I HOPE YOUR WIFE JUST COME TO TERMS WITH THIS AND LIVE HER LIFE. THIS IS A GOOD GROUP OF PEOPLE ON THIS WEBSITE. TAKE CARE AND GOD BLESS YOU.
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Permalink Reply by Artemis88 on
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This is interesting. I say that because I have had alopecia since I was 10, usually areata, but over the last year, since I started dental school, it has progressed to totalis and a bit to my eyebrows (which seem to come back and then go and the come back again) I lost a few eyelashes this time also, but those are pretty much back. However, once I realized I was going to lose all my hair, I went in the opposite direction. I started wearing sweats everyday, never wore make up, never even tried because I just thought I looked terrible all the time. The wigs I was wearing weren't me. I would look in the mirror and not see myself, so I stopped trying to. Maybe your wife is just trying to find herself, a way of seeing herself that is her, and not just compensation for what she is lacking. Something that is truly her. It is hard, because wigs are not real, even if everyone else thinks they look good. And finding a certain style, or something that she can identify with might be something that she needs. I don't know how to remedy this, but it is something to think about.
I only started trying to look decent again this summer. I lost some weight and started running. I hated running outside around people that I knew because I still try to hide the fact that I have no hair. I would wear head scarves and hope people just thought I had my hair tucked up inside. When people say "It is just hair" that honestly bounces right off of me, and sometimes infuriates me, because while they are correct that it is only hair, and not an arm or a leg or whatever, it is hair, it is a piece of you that is missing, and it is devastating. Hair is so much of what we look like. Think about the last time you described the way someone looked. "black hair, brown hair, long short, curly straight" it is what you go to first. Sometimes saying "It could be worse" doesn't mean anything, because it is what you are dealing with in the moment that really matters at the time. Just try to remember that.
Joining this site, while it has only been a few weeks and I am not very active on it, has been helpful. It helps me feel less isolated. There are people here who wouldn't look twice at me on the street, even if I walked around without my hair. There are people here that remind you that you can still find yourself even if you can't see it right now. This site might be able to help her try and find whatever it is that she needs to feel like she can see herself again.
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Hello, Mr. A, and your lovely wife Eve:
She is truly a blessed woman to have a loving, wonderful, and supportive man like you for a husband. Most men head for the hills if their wives start to lose their hair (mine did).
Alopecia is difficult for any woman, but if your wife is a woman of color, I can only imagine what she is going through, since people of color place so much emphasis on what is "good" hair and what is "bad" hair, and tend to judge people by what is ON their heads instead of what is IN their heads and hearts.
I am 56; my alopecia areata started when I was in my mid-30's, so I have been dealing with it (sometimes I fully accept it, and sometimes I have days like your wife, too, when I am ANGRY, REALLY, REALLY ANGRY about it). I think a certain amount of angst and anger about the condition is normal. But it is important to have people who are "just like you"to share with, and I truly hope she will join this site. Even better would be a local support group, but if she can just take one small step at a time......
Wearing wigs can be a pain in the butt, but sometimes it can be fun......and thank God there are wigs now that look nice, so that people who wear them don't have to be subjected to stares and mean comments. I wish your wife peace, and I truly belive that this site will be a help to her.
Cindie
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Permalink Reply by Joni on
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Welcome to AW! We're here to help anyway we can. Hang in there and know you're not alone - you have friends here.
Coming to terms with my alopecia was something that happened to me gradually. It can't be rushed but it can be encouraged. It sounds to me like she's stuck in the angry phase of her grieving the loss of her hair. And believe me, we all have been there!
Just keep telling her how much you love her and how beautiful she is to you. Tell her that you're concerned for her well being and you want her to be happy. Hopefully she will find her way to accepting what has happened and will find a way to live a healthy, happy life in spite of the setback.
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WOW your one great guy! You didn't mention how old your wife is? I know for me it took a long time but I finally realized life can pass you buy if you don't take charge.I've been bald 3 times my 30th birthday was very hard but I bought a wig an my friends had a small party for me,which helped alot. It all grew back and then once again fell out,I had just moved to a new area and knew onone ,I just wore a bbcap and everyone just accepted me for who I was Not what I looked like. It all feel out this year again this time I said the heck with it and shaved my head !!!! yES i WEAR A SCARF OR BBCAP OR WIG,but all of my loved ones treat me the same. My daughter even told me I had a beautiful shaped head. My close girlfiends have said ITS STILL YOU JUST LIGHTER ON TOP.I feel free for the first time,at 51 I don't think about what others are saying anymore LIFE IS TOO SHORT TO WAIT TO BE HAPPY!!!!!! Did you happen to see Andrea Agassi's interveiw he has had the same struggles ,he had a weave when he had long hair!!! He also said he was tired of hiding and shaved his head!! Another point I'd like to make is so many of the "celebrites" you see have a wig or weave or so much junk in their hair it ends up looking awful and they have to wear a wig.As long as you have people that love don't worry about the others.There are so many beautiful things you can wear just get a few and try them out .Blessing to you both LInda
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Please realize everything she is going thru is very normal reactions, I would very much love to talk with her, and she can e-mail me at my home e-mail, pamelamcnurlen@gmail.com She needs to know that we are all here for her. Sometimes as wonderful as a husband as you are, a woman needs a woman to talk to who is going thru the same thing. It amazes me that there are so many men so supportive of their wife's going thru this, when I went thru this the man I was married to for years, made it clear that it was my looks that mattered, we divorced and I have been married to a wonderful man like you, and he got me thru this, I am very happy now.
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Permalink Reply by Stephanie on
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Hi. You are wonderful to reach out for your wife. I also have a very supportive husband and let me tell you it really means a lot. Before writing this note I read through the others and agree that THIS is where she should start. It really saved me.
Not only will she get oodles of information, she will definitely not feel alone. At first it floors you to hear that everyone has a unique story to tell. I wanted to read that everyone's hair grew back! What I got instead was the kindest words from strangers and they were words none of my family or friends could say to me.
My advise, if you read this "Eve", is to wake up tomorrow morning and focus on that day alone. Make it the best day you can and end it with listing at least three things you feel grateful for. Lots of women spend time on make-up and fashion but the bottom line is that you need to feel confident and beautiful from the inside. Based on the note from your husband, my guess is you are!
Stephanie
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Hi! Welcome! I have a 10 year old daughter who started with AA in August and is progressing to AT now. We have found a support group in our city for children with AA. My daughter gets to meet with the other children for the first time this week! She is really looking forward to it. I hope 'Eve' comes to this website and finds some help. Even my 10 year old knows how important it is!
As for you, I get how important it is to be the support person. Do all you can, she will find her way!
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Permalink Reply by Debbi Fuller on
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Hi Mr A and Eve,
I have had AU for over 20 years and it happened to me right after I got married! My husband, like you, is a wonderful, supportive husband. I feel better about myself now as an alopecia woman that I did when I was younger. Alopecia has acutally been a blessing in my life, but that is because I have accepted that it is a part of me. I have never felt discrimination or rejection from anyone as a result of my alopecia. I have become comfortable either wearing my prosthesis or not and I know that when I want to just blend in and look normal, I have the best ways to do it. I have no anger towards beautiful women, I think that we are all beautiful in our own way and that beauty comes from confidence and a belief in yourself. It also comes from a true desire to help others and to make the world a better place. I'm no saint, I can be vain and I can drive my husband nuts sometimes, but in general I am very happy with my life and I wouldn't get rid of the alopecia even if I could. Tell Eve to write to me and I will respond to her privately. The wonderful thing about the internet is that you can do it without anyone even knowing who you are! It's totally safe. Good Luck and let me also say that I'm very impressed that you would do this for your wife. She's a lucky woman even if she doesn't know it yet. My best to you both, Debbi
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Permalink Reply by Amanda Reitmeier on
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Hi there! You guys will be in my thoughts and prayers! Where about do you live? If you're in the Minneapolis, MN area, I enjoyed this in-person support group I went to a little while back!
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Permalink Reply by Diana on
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Wow first let me say what a wonderful husband to understand and love his wife and do this so he can find other ways to support her. This website has been wonderful to me - listening, learning, blogging, discussions, all the questions we have when one goes thru this - maybe not all the answers we want to hear but they are so true - reading thru all these fabulous comments for you and your wife you can see how much support is out there. I totally understand what your wife is going thru too - I may still be at that stage only have been completely bald for a year now - I thinking people are always looking at me, and I feel awkward - but I am starting to get over it it thanks to my wonderful husband and children and so many wonderful friends who have been so great - I keep remembering to be thankful it is not a disease that will kill me and try and be more grateful. The hardest part is that society and schools anyway where does just does not have the knowledge of what Alopecia is - I hope your wife gets some kind of new light with all these wonderful messages and wish you both the very best!
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