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 Aida Ravaie-O'Sullivan on
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Dear Eve, and Mr A,
Welcome to alopecia world.
My name is Aida, and I am 44 years old woman with 2 beautiful children ages 13 and 11.
I lost my hair just last May. I didn't know anything about this, until several times back and forth to Doctors, naturopath and dermotologist, so, in July I was diagnosed with Alopecia Areata!! My life went down the hill.
My life became very sad, as I was "hiding" and yes living in denial...how come you are not too, because after 44 yrs you always and never thought that you will lose hair!
Eve, I didn't know what to do, as I really don't know anything about AA, however, I educate myself and insist that I need to know more about this, so I googled about AA, and amazingly...lots of information about this, which lots of people still don't know much too....until these days, I still read and more reading about Alopecia.
July, is the worst month for me, as this month was my birthday, and I am proud about my age...but without hair...how could I cope...I lost almost 5 kg in 3.5 weeks...lots of cry and couldn't face myself...as I lost my eyebrows and half of my eyelashes is gone too..
Eve, after I thought and lots of reading and met lots of other people who suffer this disease on the net, I feel relief that I AM NOT ALONE!!! and yes, to tell you the truth, with my children support..I said to myself "Aida, you need to accept this" and now..yes, I am now!! With or without hair, I am still Aida...I am very comfortable to go out without my wig or with wig and headscarf and of course Bald!! I am doing this now, not only for me, but I need to help others who hasn't come out yet....
You are who you are...and you are still beautiful and especially for you Eve, your husband is here to support you...
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Permalink Reply by Sophie Nault on
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Welcome to you both. Like most people have said Eve is very lucky to have a husband care enough to seek help!
I have had alopecia for the last 20 years and I have been through every feeling and thought you have described. I think it`s all about the good days... with time there are more and more. Most of the time I completely forget that I am bald. I work as a consultant in schools and I often meet with teachers and parents who have never met me and it`s only after the fact that I think; Oh! that`s right they must have wondered why i am bald! I have to be honest and admit that there are still some days where I get that sinking feeling inside (different thing set it off) but I am able to shake it off quickly.
Two things have helped my through the years and continue to help me. The first was something my mother told me when I was a teenager and first going through this. She told me I had two choices in life. I could choose to be happy or to be sad. No one and no condition could take that choice away. So I chose to take what I had and to be happy. I remind myself of that choice still now when I am having a bad day. The second thing that helped was coming to the realisation that no one (who matters) cares about how I look!! If you reflect on how you feel towards others, you will realise that this is true.
well i hope I was helpfull!
Sophie
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Permalink Reply by Lisa Werner on
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Mr. A and Eve- I am so glad you chose to write. I want you both to feel like you have been wrapped up with love from the lucky alopecia family! My daughter Maddie who is 11 is also bald. She, like you, is amazing, intellingent and beautiful. She got a great new wig today and wore it to school. It was very different from her old wig. I asked her what she was going to tell the kids.....she said, she would just say it is a new hair cut. I pointed out that it was a different color, more hair, and twice as long. After laughing, she said, I guess I'll just tell them how it is. I admire her courage and am thankful that she has that courage. She does pretty good, but I still cry when I talk about it. I think her courage and confidence has come from getting great wigs, loving family and school support, and connecting with others who have alopecia. You must connect....if for no other reason than to be an inspiration to others! And, you must come to the NAAF conference in Indianapolis. I promise I will cry with you!
Take care of yourself. Know that you are worth caring about! And, Mr. A........am thinking about cloning you.....we need more men like you who care enough to reach out! Lisa
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Permalink Reply by beatriz castillo on
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Hello, my name is Beatriz, I'm from Mexico 31 years and have universal, in life nothing comes easy and feel different to the other ufff if it is a difficult task, but in life we find a thousand more internal qualities that physical, have alopecia is to have only an accessory to the head.
hope for this website to your wife, encourage them to talk to us, is a great way to take things a little better, my therapy has helped me a lot, I hope to have the pleasure of talking with you further, even though my English is not good, and use a translator, but equally to find me here
Beatriz Castillo
areata mexico
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Permalink Reply by JeffreySF on
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You have hit it on the nose!!!
The best thing for Eve and you is to meet others with alopecia and work through this. No it isnt easy but it is therapeutic.
I started my journey with alopecia just over 2 years ago. I found Alopecia World and NAAF and now have the support of thousands of caring friends. Take this step...You wont be sorry I promise you.
Jeffrey
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Permalink Reply by maggie tidwell on
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Hello A.,
What a lucky woman to have such a supportive, perceptive husband! I hope she decides to join Alopecia World and maybe, if that goes well, she will eventually agree to come to a NAAF conference - the most healing experience there is. But let's start slow. The conference would definitely overwhelm her at this point.
I would be happy to welcome her to Alopecia World but I don't have the disease. I'm the mother of a beautiful 27-year-old who also has many struggles with Alopecia. So in this, I am more likely to be a support to you. I'll let the warm and wonderful Alopecians open their arms to her as only they can.
-Maggie
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Permalink Reply by Ebasha on
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Hello,
Your wife is so lucky to have such a loving husband, bless you both.
I have had Female Pattern Boldness since I was 10 and believe me it had my life hell, but the reason was that I really did not know what was wrong with my hair, why was if thinning so fast, why was it falling in the shower, and the worst thing is the receding hairline. For long I wondered if I was supposed to be a man! I was a kid back then and most of the doctors in my country don't know what alopecia is.
I have had a very difficult time, because kids could be very cruel and teenagers could be monsters when they want to.
But now, I am 38 and I have come a long way, I wear wigs regularly and I have come to enjoy the changes and possibilities of colours and styles, it's silly I know, but this is how I deal, I say that it's an opportunity to change my look whenverr I want.
I have a boyfriend, but I have never dared to show him my real hair, four years now and I'm not brave enough.
Your wife will be very happy here and she will see that she is not alone, I see little children with alopecia smiling in photos and it makes my heart bleed for them, but I admire their courage and how they cope, and I learn from their smiling faces, if they could be brave so could we.
Give your wife my warm wishes and if she needs anything my email is ebadaashawky@yahoo.com
God Bless,
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Permalink Reply by Joan on
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Yes Gwen I still sometimes get tearful I think it is part of the complaint. Having good family support is so good. I am a widow and the last relationship I was in the man after 2 years started putting me down and expected me to wear my wig all the time. Well he is no longer with me. I did not need to put up with that from anyone. I live in the hot climate and have got some lovely turban hats which look good. They are made by Betmar in America and are lovely and soft. In the cooler months I wear a cotton knit hat to bed.
I am now in contact with a man who was my boyfriend 50 years ago and he is so supportive.
Bless you all.
Joan Australia
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Permalink Reply by Kelly Gorman on
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I find it sad when people gets down about Alopecia but I do know how it feels. I am 22 years old and has had Alopecia since birth. Of course I didn't like it when I was a teenager coz I wanted to be like others, going to hairdressers and all that. But now I am in my 20s and wigs are better than before. I use Human hair wig now and love to play with it by putting clips on it or using headbands etc. I am a positive person. I tell myself that I am gorgeous ( I am!! ) haha... You just need to be positive to your wife and be patient. Coz some women feels that they are not women if they didn't have their own hair. Encourage your wife to come on this website and she might get help such as support or advice etc.
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Permalink Reply by Mukti on
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Hi Deepika,
I too faced similar situations as you have experienced. I found this web site about a year ago and have been empowered to live life to the fullest. I choose to wear scraves and the only make-up I wear is lipstick! I have no eyebrows and eyelashes but that's fine.
Mr. A.,
Having a very supportive and caring husband and family has been a major comfort to me. This has to be the best thing for your wife is the support and love you give to her. It will take some time for her to understand and accept what is happening to her. I, too, in the beginning was looking at covering up what was happening to me...it took some time and you know it is a process. I had a friend quote something from the Bible more than 25 years ago while she was going through some difficult times of her own... "God would not hand us what we cannot handle"! It has helped me to understand and face this part of my life!
This site is an amazing place where ACCEPTANCE IS EVERYTHING!
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Permalink Reply by Tania Hall on
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Hi Husband, I am lucky to have a husband like you. He did not push me, just listened and loved me and understood that when I was done crying and was ready to accept the hair loss , I would. It took trying everything before that could happen. Sometimes it happens when you have to help someone else and you forget about yourself. Just be there and all will happen when it should. Take care to both, Tania
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