Comment by Tallgirl on September 14, 2011 at 9:34pm

It is no one's business. When alopecia isn't around, there is no need to mention it. You just don't know what percentage of your life will be haired or not until you're 100, so why make the call now? Just be you, and leave the obsessing for just the time you are in the dermatologist's office. Then you have a cut-off point, and can vow to yourself to be a different, worry-free you until the next visit. A nurse won't want to look stupid for not knowing what one word, "alopecia," is on your medical intake sheet...so she/he will probably not look it up until you have left. The only place where mentioning it on a form would matter is for camps or jobs where a wig can get blown or knocked off, damaged from heat, too hot, etc....but you can save yourself the trouble of explaining by not even applying for those things or going to those places where wig, hat, scarf, spots or baldness (pick your own) would bother you. Remember: you make your own path in life, based on what you have been "given." So, have those Different You recipe cards ready for whatever set of head toppings, photos, responses, jokes, etc. you will need for whatever stage of hair you develop. After several cycles of alopecia in life, your memory kicks in on how to still be "you" through each.

Comment by Calipso on September 15, 2011 at 9:06am

I almost cried then you said that you fear that having your hair will hurt you in the long run. I feel the same! once my hair grew back - I was ecstatic, but it fell out again and the second wave of devastation was too hard... now I'm not even looking forward to getting the hair back. I hate this unstable situation, It seems that someone is teasing you, giving what you want and then taking it away over and over...This pain is hard to bare. I feel that loosing hair is like losing a person in a way - I feel like I am mourning someone I lost (I know It's not the same, but it feels like it) I sometimes look at the pictures of myself with hair and remember how I used to think the cut was bad, the color wasn't good enough and how it seems so funny now when I just want it back whatever they were.
Even though I understand how hard it is to be happy sometimes, but you have to be!:) Hope that this hapyness will last:)

Comment by Bald and Fabulous AKA Terri on September 15, 2011 at 10:10am

Like Calipso, I almost cried. And I too felt much like you do now. I spent too many days, weeks, and years being a closeted alopecian. When I use to talk about alopecia to others in the past, it was always in past tense. "I use to have alopecia" always ignoring that right then I was probably hiding some spots. One day I woke up and realized how much energy I was wasting with these negative thoughts. How much of my life I was giving up, not doing the things I enjoyed most. I even gave up going to horse shows for fear that someone would notice the lessen of hair that I had.
Take each day as it comes, start your morning with the vow that you are not going to let people think determine your happiness that day. Do things that make you happy, without thinking about your hair. Enjoy life. Even if you get afew hours each day with these positive thoughts before the negative sets in, you got those hours of joy. And if you work on starting each day like that, you will be able to extend those joyful hours each day. It takes time to re train our brains but it does happen.
Take care Jennifer

Comment by Jennifer on September 15, 2011 at 11:53am

Thanks for your thoughts everyone, my boyfriend just doesn't understand how this an emotional experience for me. Didn't mean to sound too sappy or anything, no tears :)

Comment by Reginia S. on September 18, 2011 at 9:21am

Just live life. The answers will arrive. If you choose to live openly and honestly with yourself and others you will be ok. Yes you will get odd looks and some off putting comments. But you will also get the satisfaction of being whatever version of "you" you choose to be. I view wigs, hats and scarves as accessories never as needs. I decided early on I wasn't going to be a closeted alopecian. I didn't want to live a life of fear. Yes it is scary and emotional. But the more you face those fears and emotions head on the less scary and less emotional the situation becomes. I forget I look different and sometimes I really have no idea what people are staring at. Am I being naive? No. I've just become so comfortable in my reality that I have to remember alopecia is not a reality to others. Live your life. Find your comfort zone. Live your comfort zone. At first that comfort zone may change daily. Experiment with what works and does not work for your own mental well being. For me honesty and not being bitter with the ignorant and uninformed is important. Medical people say stupid things, law enforcement people say stupid things. I say stupid things and I'm sure every one who posts here has said more than one stupid thing. Forgive, let go, ignore. Be true to yourself.

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