Comment by Sharon on January 10, 2009 at 8:57pm

This is a really interesting blog thanks for starting it. Our 12 year old daughter has alopecia and has had it for four years. Even though it isn't us who has alopecia we want to try and support Nicole any way we can, we do talk about alopecia, but I guess I am a bit wary of it not becoming the sole focus of who Nicole is.........it is a part of who she is but she also has other amazing qualities that we focus on as well. If she needs something we sort it if she has a problem and wants to share we listen and try and help, otherwise we get on with life (more so now than at the beginning as it does get easier to focus less as you become more accepting) My family don't mention Nicole's hair loss either they accept her for who she is and just let her be. If she ever needed to talk to any of them she knows she could.

From a non alopecian i guess you can feel damned if you do say anything and damned if you don't..........communication is a two way thing if you want to talk about it with people perhaps initiating a conversation would help........maybe you did maybe you didn't I don't know. When I see a bald person in the street every part of me wants to say "hey do you have alopecia" but what if they don't what if they have just finished chemo I would feel so bad.

I am very careful not to make alopecia the main focus of our lives otherwise it can take over and you forget what is really important and that is appreciating and making the most of everyday you are alive..........no one is perfect alopecian or non alopecian we all have challenges in our lives and it is up to us to make the most of what we do have.

Sharon

Comment by Nants the Rebellion Dog on January 11, 2009 at 5:28pm

Whoa, doggies! We're talking some dysfunctional communcation here! My parents are both dead, but when they were alive, they were great ones for not talking about the elephant in the living room! I think our families want was is best for us, but feel unable to express themselves. And I totally agree with Sharon...we are more than just alopecia. I have just started my AA journey, but I speak of it openly with friends and family. However, I don't go up to strangers and say, "Hello, I'm Nants. I have alopecia." It is as much a part of me as my blue eyes or my long legs. (However, I don't hang out on BlueEyes World or LongLegs World! LOL.) I guess I look at it like this: Right now I'm losing my hair, and it may stay gone or it may not. I can't control it, but I can control how I respond to it. I had my tonsils out when I was 5, and I don't worry about that, either. It's a good life...hairless or not.

Comment by JeffreySF on January 11, 2009 at 7:58pm

I lost the hair but kept the tonsils.

Comment by Betsy Rachel's Mom on January 12, 2009 at 6:30pm

ditto everything sharon said. my daughter, who is about to be 11, just had her one year anniversary since the first bald patch was spotted last year on Dec. 14th. she now has one heck of a long hair mohawk and is thinking about shaving the few little hair patches that remain aside from the mohawk. she can't keep a hairband it in anymore, they keep falling off all over the house. "NOT ENOUGH HAIR" she said yesterday sounding outraged about the loss of the hairbands, more than the hair. We try to joke about AA sometimes. We do engage in a little game like "Can you spot a wig?" or "Shaved head bald or Alopecia?" when we are out in public. I kiss her head. And we talk about it sometimes. A month or so ago, when trying to comfort her brother who has asperger's sydrome and was feeling down, she told him, "People stare at me all the time and sometimes they even make funny faces, but you have to EMBRACE IT, you have to embrace your differences...it's who you are!" So, talk about it? Yes, but dwell on it? NO!

Comment by Frank on January 16, 2009 at 10:38pm

I asked the question in the original blog post having a pretty good idea about why we never spoke about it while I was growing up. Especially from such a young age. My parents too kept a positive spin on everything. There were certainly times when we joked about the alopecia (sunburn on your bald head can be painful yet funny). And they both certainly recognized the fact that I had alopecia. And we certainly never dwelt on alopecia. Now, I believe that each and everyone of us experience alopecia in a very different way, so my personal experience and analysis may certainly not apply to anyone else.

As a 5 year old with alopecia, I did not recognize alopecia for what it was. I was a 5 year old kid for god sakes. I mean of course I knew I was different. But at 5 I had no real idea of what my life would be like with it, or what being different means. And if you step back for a minute... its just hair. It isn't life threatening, it doesn't impair you physically.And my parents had exactly the same attitude as the Betsy and Rachel. But there is a difference between joking about it and simply recognizing the fact that your child has no hair. I believe my parents wanted to always keep things positive, which even at 42 years old I fully appreciate. But recognizing it and actually discussing it are two very different activities. At five, there were really no social pressures about not having hair. My grammer school friends were limited to 20 other kids who could have cared less that I had no hair, and when I went out into public in most cases I wore a baseball hat. Loved em. And now this is a major point: kids don't know how to recognize or communicate their feelings at that age about what they are going through.... so I think.... I think... they take direction from their parents. So if their parents put a positive spin on the situation, then everything must be ok with the fact that you don't have hair. And at such a young age.... I was maybe conditioned to think that hey... you have no hair... no big deal right? You are not sick.... you are not hurting.... no real danger to your health. And then.... 7 years go by.... and I am 12.... and guess what... all of a sudden girls mean something different than they did at 5. And guess what... like it or not, not having hair means something entirely different to the 12 year olds in your class. Having a friendship with someone of the opposite sex starts to have an entirely different meaning. Being Gina's science partner in the 6th grade doesn't really mean the same thing as being her science partner in the 8th grade. Now to my parents, its been 7 years with alopecia. And its been 7 years for me as well. And the message that has settled in is that alopecia is ok. We can joke about it. We can live with it, we don't have to dwell on it.

But the kid with the alopecia is beginning to go through different stages in their life. Same as any kid, but with a little heavier load to bear. I am the only bald 12 year old. Things have changed, and the changes are going to get bigger.

Now the 13 year old bald kid is a freshman in high school. And that safe world you had in your classroom of 20 something kids that you grew up with has changed. You are now part of a freshman class of 350, with 340 kids that I have never met before (some of us went to different high schools). Now I am the only bald kid in a high school of 1200. Oh... and the social pressures have intesified. What you wear, your appearance have been magnified in importance. I can dwell on this but I think most can see where I am coming from with this. But guess what? Mom and dad's attitude about alopecia hasn't changed. We can still joke about it and make light of it. But.... the line of COMMUNICATION about alopecia has not kept pace with the change going on in the young teenagers life. And oh by the way... what was an acceptable attitude about alopecia for the 5 or 8 or 11 year old is NOT acceptable anymore. It needs to evolve as the kid's live and expereinces are evolving. Because guess what... there is dating, and peer pressure, kids trying to pull off your hair. Now... there is no healthy link for the once 5 year old kid with alopecia to reach out to. Who is she/she going to discuss this issue with? There is a sense of guilt and embarrassment to go to your parents now. What do they know about how you are feeling? Friends? Siblings? Who can you just go to and let out a "This sucks?" Because guess what... I don't care if Jesus Christ himself had alopecia... as a teenager... there are just going to be times when it sucks. And if you don't open yourself up to that as a parent of a child with alopecia... you don't get it... and furthermore.... it makes the kid feel more alone to deel with all this by his/herself. Because sometimes.... it just sucks.

College.... career... dating.... finding a soulmate.... maybe shedding the wig one day... all stages of life that are just different for a person with alopecia. Now... this is not to imply for a nanosecond (yes a nanosecond) that any of this is impossible to face... but it is different. And the only other person that truly understands what you are going through at each stage????? I will let each of you take a stab at it on your own.

So.... why didn't my family ever discuss alopecia???? They thought they were. They thought they did. But to me???? I was alone going through every day and life event on my own. I am being a little cut and dry about this to make the point. Its a difficult topic to discuss and explain. But my message to everyone who has a child with alopecia.... Develop a healthy dialogue with your child about alopecia. This is NOT dwelling on it. Its not. Its building a foundation to give that kid a lifeline when he or she has that day that just sucked. Its recognizing that dating means something a little different and being ready to have THAT conversation... even if its just an outlet to let them vent. Its recognizing that while all the other guys are shaving... your son is not. While all the other kids are hitting puberty and growing more hair... yours are not.... and when its time for a shower after football practice.... its a very different experience for th 15 that has NO hair anywhere. Its these details that are so easily overlooked.

I invite feedback and discussion. My hope is that maybe I help other kids out there make it from 5 to 25 with a healthy attitude about their alopecia.

Comment by Mary on February 9, 2009 at 3:11pm

Great discussion. Experienced a little of everything here. Having developed AU at 17 yrs. old my son bypassed the earlier years of having to deal with it. It was still devastating for him. We did all the treatments to no avail and researching that it could be hereditary still left us at a loss of what and why this was. That first year we were sworn to secrecy. He couldn't accept this condition that left him totally bald in less than 4 months. I couldn't even tell my family. After finding a good hair replacement salon which supplied specially made "units" he began to be able to control his alopecia rather than it controlling him. He wasn't interested in any kind of support group. He just didn't want to dwell on it. He wanted to get on with his life. We didn't know whether to talk about it or not. His father and I would do anything for him. As any mom knows, it is devastating for us too. My heart breaks every day knowing this condition has attacked him. OF COURSE, IT ISN'T CANCER RIGHT???? I don't mean to be sarcastic, because it is true, but it's easy for non alopecians to say that. Eventually, we were allowed to tell family, then little by little at the end of his senior year when he left high school he told a few good friends. I find out that I have 2 relatives (that I know of) who must have had some type of alopecia because they wear wigs. One passed away, but I remember as a child my dad teasing her about her "hat" as he called it. The other relative is still alive and knows about Christian's condition but she hasn't said anything about herself and I know she wears a wig. They are old school. So many secrets. When I found out a few months ago about my own alopecia I became sure that talking to him about his alopecia was okay to do and even something I must do. He told me one time that he thinks about it constantly. When he threw away the wig he became empowered. He started college without it, making friends with those who didn't know him any other way. He has made good friends. They play with him about it, paint his head for home games, say he is their own alopecian, and totally like him for who he is. I can say in some ways it has worked for him. I feel lucky he was older when this happened to him but he will have bad days. The girl thing for one. When my husband told me Chris was having concerns about a girl recently, I wrote him a letter feeling determined to tell him like it is. Nothing matters but his health. He was dealt a bad hand, and there's nothing we can do about it. If he meets someone who doesn't accept his alopecia then so be it. It's not his problem. Their ignorance shows their immaturity. He doesn't need to befriend them. There's no time for that. He has important goals to fulfill. As far as girls, he has to be who he is. He will have many relationships. And love hurts. Relationships break up all the time, and not because of alopecia. His time will come, as will his life partner, but it shouldn't be anytime soon anyway. I felt strong telling him these things even being blunt and not holding back for fear of hurting him. It is what it is. He has a support system and so many who love him. He's concerned about my alopecia. That is so dammed sweet. We always thought he was very special. All alopecians are.

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