Replies to This Discussion

Permalink Reply by Tim Irvine on November 8, 2011 at 4:19pm

Hi Jen,

I have had Alopecia since age 5 and although your situation is unique to you, most all of us here understand to a degree what you are and have been going through. Know that you are not alone. You have a family here to lean on and we all have days when we need that. For me personally, my Alopecia tends to be an after-thought most days. But I remember a time when having Alopecia dominated my thoughts daily. If you need to talk, please let someone on here know. If you have questions, we will find the answers as best we can, and if you need a friend, you've found a lot of them. You are not alone. Tim

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Permalink Reply by Denise on November 8, 2011 at 4:20pm

Jen, I hear you. I have a great family and super friends who are there for me, but they just do not get it. That feeling of knowing under the wig is tiny patches and baldness, and no eyebrows or eye lashes. Ugh, they try to make you feel ok, but you know it is different. I have been AA since April 2009 1 yr after a major surgery and I did not even have chemo,so what the heck. I was shocked. I can handle the hair thing if I have to, but would give money to have my eyebrows and lashes back at least. So are you total hair loss ? Do you wear wigs? I find when I am thinking of it all the time, I write to myself about how I feel, angry, sad, mad and then list the positives in my life, then burn it and think positive thoughts. It si a good form of therapy.
Stay smiling it makes it easier.
talk to you soon, Denise
have a great day :)

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Permalink Reply by karen on November 8, 2011 at 4:23pm

Hi

I know exactly what you are going through and everyone here does sweetie. It is horrible and unsetting and painful and anger follows but you will get through it. Loneliness solitude.

Karen

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Permalink Reply by Jen on November 8, 2011 at 4:47pm

Thank you everyone it was amazing to hear everyone's stories. My birthday is coming up and I'll be 19, I'm a young mom to a 8 month old. I'm engaged to someone who I grew up with (it's the dad as well). I got lucky because he tries so hard to be there for me. I'm completely bald no eye lashes anything. I've been up and down with it since having it it seems like one minute I'm fIne the next it effects me, I've had a tough time with it first time I lost it was in 9th grade and of course went through numberous docs who couldn't tell me anything until I found an amazing alopecia specialist he help alot but I quit seeing him after a treatment allergy that ended up causing me to drop out. I recently finished high school finally. This has been rough like I said and with no one who knows how it feels to have burning eyes because stuff always gets in them or no being able to have the window down on a hot day because of my eyes... Or everyone automatically going to the cancer feel bad for you face or questions

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Permalink Reply by Renee on November 8, 2011 at 5:12pm

I understand your young and this just sucks right now. Like everyone says, do what makes you feel good. I'm a young woman in my 40's. LOL. If I feel like I wanna be sexy I get a new wig, some lashes. I used to use a stencil to draw my eyebrows in but they are the only thing that has completely grown back. And just build from there. Try it, you might like it... But guess where the wig is at the end of the night? Back on the wig stand!!!!!! Until the next morning...lol

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Permalink Reply by Marianne Peterson on November 8, 2011 at 5:31pm

WOW, you could be my daughter. My daughter Brittany is a freshman in college, just turned 19 years old in October and has had alopecia since she was 15 and alopecia totalis since a couple of years ago. We have gone through all of what each of you has spoken about and I have given my daughter all the support that I can possibly provide. When she was 16, she also dealt with a tumor in her hip and we had to have a huge operation and after a few on the hardest weeks ever, we determined she didn't have cancer. At that time, she kidded, "Mom, I know I know I don't have cancer, because I've already lost my hair."

People think she has cancer, she claims that people think she's a freak, her eyes burn from anything that gets in them, wearing eye makeup can be awful, glue from false eyelashes gets in her eyes, and on and on. It is difficult EVERY day. From a relationship standpoint, one of the hardest things she struggles with is the thought that she won't ever have a boyfriend or get married and that no man will love her. I have spent a lot of time talking to her about this and letting her know that it will most likely be someone who she becomes good friends with first and who loves her for the person that she is, not the hair. In my opinion, it will be a much more meaningful relationship.

Brittany has been through every type of emotion imaginable with this disease. She admits that she was very vain about her hair before she lost it, but she and I agree that God has something big planned for her future and she thinks he didn't want her to be so caught up in the popular crowd, the pretty girls, and her hair. She is in college to find a career where she can help people.

The one thing that Brittany has said is that you can choose to live unhappily with your Alopecia and let it destroy you, or you can choose to live your life recognizing that you have something difficult to deal with all your life. She doesn't deny the feelings when she is sad because of her alopecia, but she doesn't let it destroy her. She is such an inspiration to me as a mother, I had to share my thoughts.

I will tell her to take a look on the sight and give you her own thoughts. Maybe you and she can speak further.

Marianne

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Permalink Reply by Jackie on November 8, 2011 at 4:49pm

Hi Jen. I've had alopecia totalis for most of my life and I will tell u it has been my greatest challenge. I get annoyed at others who pretend to have finally come to terms with their baldnss and are now happy in it. Its bullshit. If that were true then they wouldn't pray each night for a cure. I have always struggled. Daily. My best advice : make a choice and be happy in it. Choose to wear wigs or choose not to wear wigs. Be confident in your decision and make sure u look as best u possibly can whatever decision u make. Men will still want you. Dont wonder why. Let them. Friends will still want to be around you. Don't wonder why. Let them. And please try not to be a slave to your wig.

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Permalink Reply by David on November 8, 2011 at 5:18pm

I've had alopecia universalis since age 5, going on 25 years now. Let me know if you need help with anything or have any questions.

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Permalink Reply by Ann Wilson on November 8, 2011 at 5:32pm

I have had alopecia universalis for 16 years. I was a receptionist when I got it so had to get a wig very quickly and go right back to work. Through the years I have found the best way to deal with it is to think more of others and their needs than myself. In that way it has been a blessing for me. I now have a boyfriend who accepts me just as I am, hair or no hair, and thinks I'm beautiful without it. I do wear a wig in public. I don't know why I have UA but the way I think it could be a lot, lot worse. I could have RA, lupus, or something else that is really hard to deal with. Do I have moments when I wish I had hair? Sure. But I don't dwell on those thoughts. What good does it do? There are good things about having no hair. I don't have to curl, dye or cut it. I don't have to spend money at a hairdresser or on hair products, just wigs. I hope this helps you a little.

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Permalink Reply by Marilyn Camacho on November 8, 2011 at 5:40pm

:(yes me too... is very sad

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Permalink Reply by Emory on November 8, 2011 at 5:54pm

Hi Jen,

I developed AU in April of this year and lost all my hair, eyelashes, and eyebrows within a few weeks. Other than my husband, people don't really understand the emotional impact this disease can have. AW has been an amazing resource to talk to people who have been through similar situations and know exactly what you're feeling. Hang in there babe. Em

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Permalink Reply by Carmen West on November 8, 2011 at 6:08pm

Hi Jen, I myself do not have alopecia. I do have several friends that do. So hugs to you there are some of us with growth hair that get it. My goal as a hairdresser has been to help make my friends feel good about themselves. So hugs again Carmen West hairdresser.

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