Alopecia World
Where acceptance is all there is!
"I'm gonna miss this place"
This past weekend, I attended the NAAF Conference in Washington, DC. It was my first conference as an ‘adult.’ I have been to about 10 other conferences since 1994, but I was always in the kids’ camp. I loved every minute of that camp: I met a ton of people and was able to hang out with all of the friends I have made over the years. This year was different, though. I was able to go to meetings and talk about how having alopecia affects me. That was a rude awakening in itself. It was so nice to be reminded that “I’m not the only one.” Everyone has their own struggles that they are dealing with. It was amazing to listen to everyone’s stories and share some of my own. Many people had great advice to share, and I appreciated everyone’s input.
Although that was all fabulous, I heard the most impactful statement as I was getting ready to get in my car and go home. I was standing in front of the hotel with my luggage, waiting for the valet to bring my car around. I was caught up in trying to make sure I repacked everything and worrying about all of the traffic I was probably going to be sitting in for the next few hours. (If anyone is unfamiliar, the traffic on I-95 on a Sunday can be brutal!!!) Then an adorable little bald girl, probably about 4 or 5 years old, walked past me with her parents. I didn’t pay too much attention to them since I was so preoccupied. Right as they walked past me, I heard her say, “I’m gonna miss this place.” My heart sank. All of a sudden, I found myself standing in front of this hotel with my hands full crying uncontrollably. I still am not sure why. A part of me was thinking that she must have had an awesome weekend at the camp and didn’t want to go home, like many children who were at a camp with their friends. On the other hand, I was so upset. Although I’m sure she was not feeling like this, I thought that it is so sad that she is leaving a place where everyone else looked like her to go back home, where she is probably the only girl without hair. It broke my heart into a million pieces.
I can honestly say that I felt the exact same way. I’m going to miss that place, too! It’s amazing there! I can walk around without a wig (which I normally do anyway) and not have people stare at me because I am different. They know that I have alopecia and that’s it. I don’t have to deal with people assuming that I’m sick, and I don’t have to explain my situation to everyone I meet.
I guess the point of this story is that it’s so amazing how I tried to talk to people my own age all weekend to get some empathy, when all I had to do was listen to her five simple words. “I’m gonna miss this place.” It’s amazing how kids can sometimes say exactly what you’re feeling.
Comment
-
Comment by Alex on August 1, 2012 at 6:20pm
-
The conference next year is in St. Louis, MO. The NAAF website will be posting more info about it as it gets closer. (naaf.org)
-
Comment by Dana on August 1, 2012 at 3:11pm
-
I wish I could go to one of these conferences. I didnt even know they existed. The only things anyone ever speaks to me about is how to FIX the patches and cover them up. I get the wigs, they kill my head because I also have Occipital Neuralgia (nerve type headaches) and cant take the pressure on my head. My self esteem is at an all time low, I find nothing in life funny or fun anymore. I would just like to fade into the woodwork and never return. My Hairdresser (of past) thinks I should try rogaine, others I speak with say they think it's coming back. My poor husband just never says anything (we were married 1 month before it really started coming out) I feel like 1/2 the woman I was before it happened. I still cry alot, most do not know this, the ones that do dont understand why, including myself. @ Corrine you are so brave, I couldnt go out in public bald and it is so hot here! I have a horrible heat rash on my head from ball caps and wigs, but I refuse to go bald in public. If I so much as wear a cap supporting breast cancer everyone asks me if I am a survivor. I do not have a problem with this except that I feel as though I am misrepresenting myself as a cancer patient and that is just simply not true, some I feel think I am just lying to them because of the way I look. Life with this has completely changed me and I do not know how to turn it around. Could anyone give any info on the conference info for the next one?? Thanks
-
-
Cheryl, I couldn't agree more. It's not a physical place, but an emotional state while there. I was so touched by how many people felt comfortable enough there to "take the first steps," so to speak, as in taking off wigs/scarves. I'm so happy that I have been fortunate enough to attend these conferences. They are truly a great place for everyone affected by AA.
Storm, there's nothing to be embarassed about! You are definitely not alone! Everyone struggles with their own personal issues. Sometimes all it takes is just talking about them with someone, even if it's someone you do not know.
-
Comment by Storm_Uchiha on July 28, 2012 at 8:20pm
-
I wish I could go to some of these things...But I feel too embarrassed...Not cause of my lack of hair but because of how my skin looks...I deal with a lot of break outs and it makes me feel on the spot all the time....I do want to go though...Sometimes I just...Feel so alone even though I can come on here...There's not many kids on...Feels like it's easy to get left out here.
-
Comment by Cheryl, Co-founder on July 27, 2012 at 2:05pm
-
Alex, I met you at a conference when you were probably about her age! And now look at you, I can only hope and pray that she experiences the same self-acceptance that many of you that I met/worked with at the NAAF kids camp. It is funny that she says, she is going to "miss this place", because we all realize it is not a place, but the people. I remember my first conference over 20 years ago (I have been to 20 of them myself). It was the most amazing feeling. You get in the elevator, go to the pool, go to the mall or a restaurant around the hotel and all you saw was others with alopecia. A few days without having to worry about your alopeia spots, wig tape, a wig that looks "wiggy", or are others staring at me because I am not wearing my wig... especially when "me" becomes "us". I did so many of my "first" in the comfort of a NAAF conference. From the first time removing my hairpiece at a dance, to going out with out one to eventually leaving it in the room or at home for the weekend. A lot of great memories and great friends. I missed the conference this year, but I look forward to seeing you all at a conference again soon. Hope to see you in St. Louis!
-
Comment by Ashley on July 27, 2012 at 6:17am
-
Aww that made me happy and sad at the same time! I cried because I thought that little girl could be my little girl someday since she could inherit this gene :( I want to go to a conference now. This post is what convinced me to join this site. Are there ever any conferences in Las Vegas?
-
Comment by Alliegator on July 25, 2012 at 5:34pm
-
Are you serious Kim!! That is the best news for us Texans. 2014 SA NAAF Conference... Marking it on my calendar. San Antonio is a wonderful town. That will be a lot of fun. I will have to be at that one for sure.
-
Comment by Kelci on July 25, 2012 at 2:04pm
-
FABOZZI!!!! I love you! I'm so happy I got to see you and spend time with you this weekend. This post pretty much sums up the conference perfectly. It's always weird to go back to being the only bald kid in the room and the conference is so comforting in that. Sometimes those 4 days get me through the year. After missing it for a couple of years I forgot how much the weekend lifts your spirit. Thanks for sharing! LOVE YOU!
-
-
Loved this post,Iunderstand exactly how that little girl felt, ive worn a weave or a wig everysince i began to loose my hair so no one but those closest to me, actually know I am bald. Although I am a 66 yr old women I to would love to get married again, but fear haveing to tell the person about my condition. I will say a prayer for that percious little one, that shs up strong and secure in herself, knowing that God loves her with all his heart, no matter what others try to tell her.
-
-
I live in Milwaukee WI. I have been out for work for about 3 yrs So I cannot afford to fly anywhere else. I am 56. There has never been a conference in Milwaukee WI., that I know of. Why? Don't know. When there is, I will gladly attend. I have had Alopecia Totalis for over 40 yrs. Mark Hansen
Disclaimer
Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.
© 2025 Created by Alopecia World.
Powered by
You need to be a member of Alopecia World to add comments!
Join Alopecia World