Replies to This Discussion

Permalink Reply by Mandy on July 7, 2008 at 12:03pm

Sandra the most important step is finding that acceptance for yourself first. It is perfectly ok that you are not there yet. It can take time but you will find it. Once you do, telling people will become easier.

Permalink Reply by Mandy on July 8, 2008 at 2:02pm

I think everyone's grieving period and path to acceptance is different. I cried for about 2 days. Then just woke up and said...I can feel sorry for myself or I can love myself the way I am and just get on with my life. I decided for the latter. I told everyone I knew about my AA that day. That was just my choice and my way of coping. I told EVERYONE. Sent out mass emails and blogs and explained the disease to everyone. I'm really glad I decided to do that. I think that for me, personally, it was the way to go and it helped me get to that happy place. But not everyone handles it that way...like I said it's different for everyone. You just have to follow your heart and do what feels right for YOU.

Permalink Reply by Tamara Dixon on July 12, 2008 at 5:56pm

Hi
I am still trying to cope with telling others and choosing who to tell. I still have quite a bit of hair but its becoming more obvious that losing it all may be a reality. At first telling people was really hard and I could feel myself breaking down but now its not so hard. Its harder to deal with people wanting to know what I could do about it, what medicines take care of it and what the doctor said. So far I have only told people who I believe have my best interest in mind.
A bigger problem for me is what to do when its time to go back to school (I am a teacher).
How am I going to style my hair as it thins out? Do I tell my coworkers? Or should I just get a weave?

Still confused

Permalink Reply by Carol on July 16, 2008 at 11:00am

I've spoken to another teacher and also read an article in the NAAF newletter about another teacher. The woman I spoke to works with difficult children and her life is much easier with a wig on. The other in the article was a man who decided to go bald. He earned a lot of respect from the kids who were curious about his lack of hair. He taught each class about alopecia and although the kids called him Coach Bald, he didn't mind as everyone was very supportive and nice to him that he could allow for a sense of humour.
You have to keep your own comfort level in mind about telling others. As for styling thin hair or getting a weave, which is also your decision, I would personally get a wig and wear it from the start of the school year if it is something you want to keep discrete. If you want to share it with the school though, I have to applaud you. It takes much bravery to share something so personal but is so worth it and it spreads awareness! Good luck! :)

Permalink Reply by Meghan on July 12, 2008 at 11:27pm

Hi everyone, I definitely understand how you all feel. I was recently diagnosed about a month ago and in that month, I lost everything. My entire family knows, and I have told a few of my close friends and my boyfriend. However, my issue is that my hair started to fall out right before I came home from college for the summer. So, I am nervous about going back in a little over a month with absolutely no hair. The last time most of my college friends saw me, I pretty much had a full head of hair, a full set of eyelashes and eyebrows. My roomate is the same girl I lived with from last year, and we are very close so she already knows. However, we are living in an apartment with two other girls who we really are not that close with. Clearly I am going to tell them about my alopecia because I absolutely refuse to walk around with a wig in my own apartment (Plus, we have no air conditoning, and august-september it will be 100 degrees in the rooms!!). As for the rest of my college friends, part of me wants to tell them while the other part of me doesn't. I feel that people are going to find out, and I really don't feel that I should have to walk around having to hide something. That will just stress me out more! I guess what I am trying to say is that I don't know how to tell people that I haven't even seen for 4 whole months that I have Alopecia.

Permalink Reply by ruth on July 13, 2008 at 5:09pm

wow...i can imagine how stressed out you are....and i don't understand how you were recently diagnosed and lost all of your hair...ugh!.....why don't you set up a roommate meeting in your apartment and start telling them the clinical story about AA along with some personal issues you can share with them....when i started telling my closest friends, i could be me and let my true feelings out in the open....when i told my co-workers, i tried to be very positive about AA; sort of trying to make them not worry about me and in some way it kept my spirits up....sometimes if felt like i was just putting on a "facade" and at the end all my bottled feelings would come out....Now i have AT...and i want to let more people know because it feels like i am hiding it....i am 4th grade teacher and i am not fixing up my classroom, rearranging desks and bookshelves, putting up bulletin boards, or decorating my door with back to school signs with a wig.....that's for sure....it is very annoying to wear that thing when you want to get down and dirty....more co-workers will notice that i don't have hair and when they ask i will be ready to come out.......good luck to you and i hope you gain the strength to look them in the eyes and with self-confidence explain to them what is AA as I wish that for me too :)

Permalink Reply by Tamara Dixon on July 14, 2008 at 7:19pm

Hi everybody

Its nice to talk to people who have experienced the same things. I was wondering ruth sounded surprised that Meghan lost her hair so quickly so... how quickly do people lose their hair? I have alopecia areata, I've got some large patches and some smaller ones getting started but what are the chances that i will lose all my hair and about how long did it take you guys? My doctor says its rare for people to lose all their hair but i am not sure. Also I read the book Bald as a Bean and saw some other stuff online and people said their hair came out in clumps but I havent experienced that.

I know everyone is different but it would be helpful to hear your experiences.

Permalink Reply by jj on August 11, 2008 at 11:09pm

Hey all,

I'm in the very initial states of this journey. In fact, I have not yet had a confirmed diagnosis - still awaiting blood tests to confirm it's not a thyroid problem or B12/iron deficiency. Given all of the reading I've done in the past few days, along with my doctor's comments, it's pretty obvious that alopecia is my issue.

Since hearing the news, I've gone through quite an emotional roller coaster. All my life I've been praised for having healthy, beautiful, thick hair. I hadn't realized what an important part of my identity it had become. There have been many, many tears in the past four days.

What I had forgotten, was that I've always striven to be different. Whether that was through clothes/make-up or achievements, i've always enjoyed being an individual who stands out from the crowd in one way or another, albeit in a quiet way. I guess for me, it's like issuing a silent challenge to people as if to say "Do you have what it takes to look beyond my differences and accept me? If so, then you're quality peeps!" lol

So I'm trying to embrace this in the same manner. I can't stand the thought of a wig. Having had such thick hair all my life, my mellon and neck sweat so much and I can't imagine making that situation worse. If I lose all my hair or get much worse than I am now, I will try my damndest to enjoy making and wearing beautiful scarves or simply going out in all my shining glory.

I have, thus far, been very open about what's going on with friends and family. For me, being transparent about what's going on is the best way to deal with things. I'm so fortunate to be surrounded by people who, although concerned, see me for me and not my appearance. That said, can there be a bigger blow to a woman's ego?

I'm thrilled to have found this site, it's helped so much already. As many have already said, this is going to be a journey and has an uncertain future. I'm scared of it, but kind of curious too.

Hats off to us!

Permalink Reply by Allison Miller on November 14, 2009 at 3:15am

I know how you feel. I just found out about this. I am usually pretty verbal to friends and family about what is going on in my life, but this is hard. People love to hear something good, but when you are telling them something bad they dont want to hear it. I was pretty upset this morning when I found out, and being the verbal processer I am I was telling my dad. He is really understanding. Then my friend called though and I told her. My dad told me I should be careful not to try to get sympathy from people. That is the last thing that I was thinking about. Now I am nervous about sharing with people, because I don't want thier sympathy...I just need to talk to someone. I never expected that this could make someone feel uncomfortable as if I was expecting something from them. I can deal with not having hair...I am not sure how to handle having to hide it from everyone so that they are not uncomfortable.