Maybe it's a stupid question... I'm really not looking forward to a life of sadness... nobody is, this I know, but I would love to hear from people who are doing well with this disease. How do you cope? I know a lot of you do. I see your smiling faces. Me? I can hardly get out of bed in the mornings anymore. I have to "Rogaine this, and latisse that" Derm appointments, steroid injections, etc. Wow! Too much! Trying to save hair that is probably just going to go anyways... I really just want to be happy, somehow... I want to feel "at home" in my own skin again. I want to wake in the morning and have my coffee with the same joy I always had... It's just not happenin' right now, but I see some of you, a lot of you, who are beautiful and happy, and getting by. How? It blows me away when I see pictures of people who are dealing with this in such a positive way. You are the true superheroes. I wish to be that brave.

Views: 3751

Comment by Lisa Santer on November 13, 2013 at 8:41pm

Oh my yes, I'm happy. I have a life full of adventure, contemplation, and loving relationships. I pushed myself to see how small the concerns about reactions to my hear were compared to the big and irresistible pull to live my own full life. Now it's just a habit to seek joy rather than avoid possible pain.

Comment by flybutter on November 13, 2013 at 8:47pm

I love to hear that. You're experience is invaluable to others, especially me

. Thank you. :)

Comment by bbonbi on November 13, 2013 at 8:49pm

I got my freedom wig, which has it's pros and cons - but I feel protected from The World - I control who I tell or don't, and my identity is not this disease I've had for 27 years. I decided to keep (relatively) fit, so that I feel some control over the rest of my body.  I just live my life. My big hair concern as I'm middle aged is what to do with color....I'd have gone gray long ago!  And - I'm married, was married when I got this, and yeah, it's not the best thing.  But not the worst either, and so I just keep moving forward.  I decided, sink or swim? if I sink, I'm hurting myself, so I should learn to accept it even if I don't like it.  

Comment by Bernadette on November 13, 2013 at 8:50pm
Any time you deal with an issue, weather it be medical or otherwise, you have 2 choices. Throw a pity party or embrace & accept it. It is your choice. It sound like your putting a lot of time & energy into saving your hair. Your hair doesn't define you, unless you let it. I'm 44 and was diagnosed just a year ago. I now have alopecia universalis. Yes. It was devastating! But, i decided to embrace my new found beauty. The 1st thing i did was have photos taken of me without a wig. Whenever I get down on myself about my alopecia, i look at those pictures & I see a beautiful bald women! And thats what makes me happy!
Comment by Fay on November 13, 2013 at 8:51pm
Yes, I Am Happy. The first 8 months were hell. I was miserable. Always wearing a scarf. Scared the scarf would fall off and etc... I looked the mirror and felt blank. Ugly. Bald. I tell you one think, it is better to be bald then becoming bald. But then I went to Vegas. Everything goes in Vegas, right. I was anonymous. So I took the scarf off and no one blinked or stared or did any of the things I thought they would do. I was finally free to be me and I never looked back. I could go swimming and not worry about my hair. My confidence came back when I said to myself: screw everyone, they do not pay my bills. I am still awesome. Believe me when I say the process wasn't all laughs and giggles. But, now I am in a good place. People who know me(co-workers, family) say they forget I am bald. Heck, I forget until I walk out in the cold lol.
Comment by Keri's Mommy on November 13, 2013 at 8:52pm
Hi...I saw your post and had to chime in. My daughter was diagnosed with this senseless disease at 16 months of age. At that time, I was a walking, teary eyed zombie. I couldn't eat, I couldn't sleep and with each strand of hair she lost, so did my dreams of styling her hair, playing in her hair, watching her hair grow. I was mostly filled with fear and uncertainty about her future. I didn't think I would ever be okay again...but let me share this with you...I am ok...she is ok...and has a head full of hair right now. During that time when she was losing her hair,my anxiety level was out the roof...but I prayed. I prayed hard. I prayed over her hair ties, over her fallen strands of hair...even over her body while she slept. Her doctor said her hair would never grow back, but I believed that it would.I started experiencing such peace in my life. I wasn't sure when her hair would grow bk, but even though she was bald, I still had peace. I know your tired and frustrated and wish you didn't have to deal with the disease at all. You will eventually be at peace with who you are and overcome.
Comment by Debbi Fuller on November 13, 2013 at 8:54pm

I'm happier than I would have been without alopecia.  It gave my life perspective in some ways and I learned to make lemonade out of lemons.  I have a great career thanks to alopecia and in the process I help others feel better about themselves.  I never ever miss out on any opportunity to live life to the fullest.  I don't hide the fact that I have AU, in fact, I celebrate it and tell perfect strangers about it if the subject comes up.  I have great friends, a great husband, a great job and I love my life!  It's all about taking charge of your life and deciding to allow fun, love and adventure in.  Don't allow anything negative into your life.  Expect good things and they will come.  I would not go back to having my own hair even if it were possible.  Hey, I'm a blonde now!!

Comment by Dena on November 13, 2013 at 8:54pm

We were a mess in the beginning. All of the unknowns. Is it going to fall out? Is that new hair coming in? It is getting worse, how am I going to keep hiding this from people? All of the doctor visits and experimental treatments. Finally my daughter lost what little she had. There was no hiding anymore. We went to a couple more appointments and finally one day she asked me when her next Dr. appointment was. I told her and she said she didn't want to go. I said o.k and canceled the appointment. We had blood test and allergy tests done and everything came back saying she was extremely healthy. So we stopped all treatment and quit trying to hide. At that point we just accepted that it was our new normal. She is probably one of the happiest kids I know. She loves experimenting with new looks. Some days she wears a wig, some days a beanie, some days a fake tattoo on her beautiful golden dome as she calls it. It was really hard in the beginning, but I can see that it has changed her into a more sensitive, confident person. I don't know what the high school years will be like, but for now I love that she is embracing her uniqueness. These boards can be a great support, but it can also be depressing at times. Most people come on here because they are having a hard time dealing. You can start to believe that everyone with alopecia is struggling, but I disagree. I think a lot of people are just busy getting on with their lives. When my daughter was first diagnosed forums were my only link to Alopecia. We knew no one dealing with this. Now I have came across two other individuals by chance meetings that have given me confidence that everything will be o.k. One is a woman in her 60's who is an artist and the other is a 16 yr old. girl who is just a ray of sunshine. They both definetly feel comfortable in their own skin. What role models for my child. Try to find a support group. You will see those superheroes and they will help you find your way. It is a lot better than hiding. It just takes time, but it can get better.

Comment by Lovely butterfly on November 13, 2013 at 8:56pm
Hey Flybutter,
First of're absolutely beautiful!!
Honestly, what's gets me through is just TRULY accepting the fact that "It is what it is", and accepting the fact that I will live my life with no hair! I figured, everybody is trying to live this cookie cutter life trying to emulate each other. Us Alopecians are a very special group of people who will just have to rock our bald "headedness" with pride. You know? We have choice on how we feel and live...choose to accept and be beautiful in YOUR way.
Another thing that gets me by is the fact that I don't care what people think about me!! This may be challenging to some people, to not give a damn what people think, but its extremely empowering to embrace yourself and to treat yourself like you want others to treat you.
Good luck!!
Comment by Fay on November 13, 2013 at 8:59pm
Oh, by the way. I have AU. No eyebrows, eyelashes or anything. Well I should say I had AU. Hair just stared growing back on my head in spots, eyebrows and eyelashes too. I have done nothing. No steroid, rogaine and etc... I walk out patchy head and all. By the way I work in the public schools. So I see hundreds of people a day. They are all used to now.


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