I was in Florida for vacation with family this past weekend. We rented a condo by the beach. We decided on Saturday to have a shrimp boil. We had to go grocery shopping for everything to make it. My Mom and Aunt were going to the store to get everything. At first, they were just going to go by themselves. I wanted to make a dessert so then they decided to have me go along also.

We went to the register to check out. We had bought a 24 pack of water, and the employee asked us to hold it up so she could scan it. My Mom had to hold it up 3 times, and got annoyed with the employee so our experience started off badly. Then all of a sudden the employee turns to me and says "did you just have surgery?". I was wearing a scarf. I said "No"... "I have alopecia". She said "What do you have". I said "Alopecia, it is hair loss". Then I look at my Mom and she mouths to me "say it is none of your business". Then the employee starts to tell me about how she had surgery, and had her hair shaved off then wore a wig. Then she told me all about her wig and how she still wears it occasionally. Meanwhile, I can tell my Mom was upset and ready to leave the store.

As we were walking to the car, my Mom makes a comment about how I don't have to say anything. I said "but I need to create awareness as much as I can". She said "but most people won't care or listen". I said "I want to try to raise awareness as much as I can so maybe next time the person won't ask that question".

Then later that night my Aunt & I were sitting on the patio alone. She said "did that upset you or your Mom more today". I thought that was a great question. I think it upset my Mom more than me. However, if that had happened 2 years ago, I probably would have started crying. I am in a better place now so it doesn't upset me like it would have in the past. I don't live close to my Mom, and I don't tell her about my daily experiences with people like this one. I believe this was her first experience with me with something like this so I can understand her reaction. I like to believe she was just sticking up for me. It might have been hard for her to see & hear something like that. She knows what I went through too over the years so that is why I think she was just sticking up for me. But, she was the one who told me that people are ignorant, and that I was being vain so it did surprise me a little how she reacted. We will see what happens next time! Until then... I will continue to try to raise awareness.

Views: 41

Comment by Lisa-Lynn Marini on July 26, 2011 at 12:03pm
hello Alliegator,
you go girl!!!!!! there is nothing wrong with letting people know you have alopecia, as it's something you have to live with as do I and many others on here.
I know when I go out and where a scarf, I tend to get worries someone will ask me what's with the scarf and my husband would say to me , tell them is none of their damn business but I can understand where your mom and my husband are coming from they want us to be continuously happy that they are afraid we will get upset over it, they are just protecting us which makes me love my husband even more. But at the same time if someone ever did ask me why I was wearing a scarf I too would tell them why because around where I live alopecia is extremely rare and no one knows of it ,so if I can raise the awareness I will.
Good luck to you and know that your mom just loves you!
Cheers xo
Comment by Cheryl, Co-founder on July 26, 2011 at 2:48pm
I had a similar situation, when my father came to visit me when I lived in Ontario. We were at a restaurant and some teenagers where snickering and whispering to each other. My father turned around mad and said something to them. Needless to say the shut up quickly ;) But later on, I explained to my father that when I made the decision, I knew that it was going to have consequences -- good and bad. It was his first such situation and he was just being protective. I think he understand, if they are respectful he will step back and let me handle it, but me being one of his "babies" I still think that he may react if the person is being ignorant. Good on you for your stand and for continuing to raise awareness. It makes a difference, even if for not us, then for the next person that comes along.
Comment by Petra on July 26, 2011 at 3:22pm
Most people just assume that we have cancer and going through some kind of treatment. If somebody asks me I tell them I have alopecia and if they know what that is. If they are interested I will tell them. I think the more people that are aware of what alopecia is will help all alopecians. It is a very rear situation were I won't talk about it to someone, usually because I am not getting a good vibe from the person. So far, I have never had anyone be down right rude to me, so I'm not sure how I would react, or how my husband would react, hopefully I'll never find out :-)
Comment by Thomasleejones on July 26, 2011 at 6:02pm
I totally understand where you all are coming from. I don't have eyes in the back of my head but i swear these girls was laughin at me at this restaurant last Friday. I was grubbing with my dad and little sisters n my dad had me switch seats with my sister to sit by him. he say it was to take a pic of my sisters but i dont know if he was just lookin out for me or not. I'm not trippin though cause those girls didnt even look good anyway. But I had an even worse situation last week too. Had these two girls lookin at me kinda smiling/ giggling. first thought was they was into me. until i scratch my head an remember my hair was fallin out. they was probly just laughin at it. at first i was kinda trippin about it but then a friend start tellin me about her life in Russia and how bad it is living in a place like that n i remember losing a little hair aint nothin compare to what a lot of people go thru.
Comment by Bald and Fabulous AKA Terri on July 27, 2011 at 1:34am
I too will use any reason when asked about my appearance to explain about alopecia. Sometimes its frustrating with the "alo-what" but I try to remember that many people have never heard about it. Sometimes tho I even feel maybe I talk too much about alopecia that I'm sounding like a broken record. But then again I figure that goes with the job of raising awareness and I wouldnt have it any other way.
Rock on girl.
Comment by Rodeli on July 28, 2011 at 12:10am
Hi Allie! I can totally relate to how your mom reacted and your aunt's insight. When I was growing up, it was very hard on my parents--especially my mom to know when kids were making fun of me, etc. I remember my grandparents telling me that if I needed to talk about anything that was happening I could talk to them. I think they handled it better. I do remember once when I was a little girl, I went to the supermarket with my PopPop ;-) and at the checkout the middle age cashier smiled at me and said something about was I playing dress up with my mommy's wig. My grandfather got really mad at her and told her off. She was quite taken back. I have to admit I loved my grandfather for standing up for me but in hindsight, I think he was a bit harsh with her. I think the cashier had no idea of alopecia and she felt bad afterwards after my grandfather raked her over the coals. Recently I was in Disney and got brave enough to go a whole day without my wig and wearing a big scarf. I thought people might stare but they really didn't. My girlfriend's husband looks a little like Jesus and he got more looks than I did. Heck, some guy came up and even asked if her could take his picture! LOL
Comment by Tallgirl on July 28, 2011 at 5:23pm
Rodeli., I love that story! Yep...now the hairy guys and hippies are the oddities!
Comment by Mary on July 29, 2011 at 12:02am
Good for you!!! This is the only way we'll become less of an "oddity" and be able to be more comfortable in public. Keep on telling people and being yourself.

I understand how it could be hard on your mom. I hope she has an easier time in the future.
Comment by jean on July 30, 2011 at 12:07pm
HI ALLIE,
I TOO FELT THE NEED TO TELL EVERYONE THAT COMMENTED ON MY BEAUTIFUL BALDNESS ABOUT ALOPECIA, WHETHER THE COMMENTS WERE GOOD OR BAD. THERE ARE SO MANY UNAWARE PEOPLE. BUT , I THANK GOD FOR GIVING ME FAITH TO STEP OUT AND EXPERIENCE THIS NEW CHAPTER IN MY LIFE. SO, I LET PEOPLE READ ME, GIVING OFF THE LIGHT AND BEAUTY GOD HAS GIVEN ME AND THEY NOT ONLY SEE ME, BUT THEY SEE THE LIGHT OF JESUS IN ME. IT'S WONDERFUL TO BE ON DISPLAY FOR THE LORD AND BE ABLE TO EDUCATE HIS PEOPLE. KEEP THE FAITH. HAVE A GOOD WEEKEND...... MUCH LOVE

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