What do you do when you see others with Alopecia?

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What do you do when you see others with Alopecia?

Posted by Orbit on June 13, 2008 at 6:33pm in Acceptance and coping

Perhaps I just have my Alopecia radar on these days, but I swear there are more and more people popping up everywhere with Alopecia lately! For the longest time growing up I never knew anyone else that shared the same condition as me. I felt lonely and wished I had someone to relate to.

What I'd like to know is - when you see a stranger with obvious Alopecia (not just thinning hair, but someone who has tell tale smooth patches, or completely void of hair like me) on the street, in a store etc.

Do you ever speak to them?
Do you strike up a conversation with them?
Why do you or why would you not?

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Replies to This Discussion

Permalink Reply by Carol on June 13, 2008 at 7:17pm: There are more people out there with alopecia but that's only been at par with the growing population - 2% is 2%! I have spoken to people I've seen with alopecia when out and about however because I go bald people usually notice me first. I talk to them because I'm interested in knowing where they stand with alopecia. It's always great to have another alopecian friend who holds his/her head up high and its even better to be there for someone when they thought nobody would ever understand them.; ▶ Reply to This

Permalink Reply by YoKasta Martinez (aka kastababy) on June 13, 2008 at 8:47pm: I always do, but it's funny -- I never started meeting other alopecians until 3 years ago, and come to find out I work with several!!! More often than not, I am often the one that is the most well-adjusted, whereas the alopecians I meet tend to either be newly diagnosed or still stuck in the pity party mentality. Usually after meeting me, we tend to stay in touch, and their difference in outlook is amazing -- it never ceases to amaze me what finding someone who can relate to what you are going through can do!!!; ▶ Reply to This

Permalink Reply by catfancy on June 14, 2008 at 3:23pm: When I worked at a hair replacement salon, I wore hair, and I was always excited to talk to women there, in particular younger women and teenage girls. They were often nervous and not too open to talk to me, though. And it was often hard for me to bring up that I was wearing fake hair in the first place. I mostly brought it up if they hadn't had theirs put on yet and were wondering what it looked like. There were a few younger girls who were glad I was there and I would let them play with my "hair" and that was kind of fun.

Outside of that job, I've only met one person with alopecia, and I never talked to her about it. I went to college with an AU woman, but I didn't really know what alopecia was and I certainly didn't think of myself as "alopecian" at the time. I never spoke to her about it, and I was always in wigs when I saw her.; ▶ Reply to This

Permalink Reply by JeezLouise on June 14, 2008 at 6:50pm: I have never seen anyone else with alopecia... that I know of. I've got the radar thing going on as well, but mainly for wigs. I do occasionally see people who I think are wearing wigs... but I'm not going to go up to them and ask them about it.

I'm pretty sure that if I saw someone who was "Smooth and Out there" like me, I'd strike up a conversation, but as I said, I haven't yet.; ▶ Reply to This

Permalink Reply by Zoey on June 14, 2008 at 8:56pm: I haven't met anyone outside around town. But, I did work with a gal that her sister in law was going through it, and was just diganosed.
Since I am open about it, and everyone at work knows I wear my hair. They are always willing to come up and talk to be about things.
Anyways, She gave the young lady my number so she could call and talk to me. Cause she wasn't doing that well. But, I never heard from her :( Its too bad...
If I knew someone that had it ten years ago, It probably would of helped me coping with it all. Instead I knew nobody. But, my parents & brothers were there for me through the whole process and still today :)
Now, I have neices that want me to always wear the pink flowered scarves and nothing else..lol Funny huh!; ▶ Reply to This

Permalink Reply by eddie opitz jr on June 14, 2008 at 9:52pm: A girl at my bank asked why i started shaving my head and i told her the reason. Well, one of her co-workers said she noticed the really smooth patches and told me she also had alopecia and how long. She still had her hair but had two bald patchses. Anyway, we talked about it and I felt less alone. I don't think I could just approach a stranger about it but thought it was nice that someone else w/ alopecia asked me.; ▶ Reply to This

Permalink Reply by Melissa on June 15, 2008 at 1:07am: What a great topic!! I swear the mall in my town is a breeding ground for AU. It seems like I see another one every time I go. I am usually way too embarassed to go up and ask. I feel like if they aren't wearing a wig they wouldn't mind talking about it, but I still usually never say anything. But one time I did see a girl wearing a wig and she had no eyebrows/eyelashes so I stalked her for a while then asked "um, do you have alopecia?" and she said yes. So I got really excited and said "ME TOO!" but she was just like, "oh. ok."

It was a little bit of a downer, because I wanted to be her new best friend I guess. Hahaha! When I see someone wearing a wig I don't want to offend them by letting them know I can tell it's a wig. But I would LOVE for another alopecian to talk to ME. So, I don't know. I have pretty mixed feelings about it. I really want to talk to them, but I usually chicken out.; ▶ Reply to This

Permalink Reply by Isabelle and Anthéa on June 15, 2008 at 9:17am: wednesday, we returned to hospital with Anthéa like every 6 months and for the first time, there was another child with AU.
and...
I haven't dared to talk to his mother..I didn't know what to do and what to say.
I know that she noticed anthéa was like her child but she just stayed on her seat and I, on mine.
remembering that, I think I'm stupid; I should have talked to her

but it's too late!; ▶ Reply to This

Permalink Reply by Allie on June 15, 2008 at 9:25pm: I know exactly what you are talking about. I've seen more people with it these days. I want to say something, but usually I have my wig on and I don't want to offend them or make them feel uncomfortable so I keep walking. Allie; ▶ Reply to This

Permalink Reply by Karen on June 15, 2008 at 10:57pm: There is a guy that I see when I walk to the carpark from where I work and I have seen often. He is completely bald with no eyebrows and eyelashes and looks really good so I know that he has alopecia. Every time I see him I would look at him and I gather it would look funny because he would be wondering why this little asian girl keeps looking at him all the time. Next time I see him..I told myself that I would approach him to say HI.; ▶ Reply to This

Permalink Reply by tamgirl on June 16, 2008 at 9:23am: hahah yes i speak to them. It depends on what energy is coming of them. Its just a thing were i use my feeling for. some ppl dont want to talk about it or are shy, i wouldnt force myself on somebody.
i often have ppl stopping me and asking if i have alopecia. I dont mind that at all. Its a way to raise awareness to for me.

My mum got an eye for alopecia ppl, hahah she works at the university here and she always spot them. she uses her feeling to and sometimes approache them in a safe way, so its more safe for them to talk about it. Mum has got some special friendships at work cuz of it.
She told me there was a student who was shy and walking around with his head low. but now when he see my mum, he put his head up and look at her and say hi and smile. Mum said she dont know if he does that because of her, but she deffo enjoys that he feel more compfy around her.

I even have ppl with cancer coming up to me and telling me that they feel strong cuz they saw me in the past and saw that i could deal with it.. so for me it dont matter if ppl think i have cancer or not. Its what they think of it and can see that all us bald women are strong no matter what the cause is.; ▶ Reply to This

Permalink Reply by Orbit on June 16, 2008 at 1:33pm: Interesting how we deal with people, everyone has their own "way". Since I started noticing people with Alopecia more often I now feel very confident speaking with them. Naturally I assess the situation, I don't want anyone to feel uncomfortable by my forwardness. So far I have been well received when I approach Alopecian strangers. I've always been very outgoing and have no problem meeting people. I find that a smile and compliments really go a long way.

About 3 weeks ago I was tending to the gardens at my local library (I am a Horticultural volunteer) and I looked up to see a man perhaps in his early 50's. To me it was obvious that he had AT or AU. With a big smile I asked if he had Alopecia? Naturally he was surprised by my question and laughed and said "Yes, how do you know about that?" I told him that I have it too and I have the most severe form of it. He didn't beleive me, I showed him my arms, asked him to look closely at my face, pointing to my brows and lack of lashes, I told him that I choose to wear wigs. We had a nice little chat standing there on the street. His wife joined in the conversation. They had a number of questions and were so surprised to hear that I had it too. They had been told by their doctor that it was like a 1 in a million chance to get it and thought he was the only one. I shared with them a bunch information and told them about this website (maybe we'll him here soon!?). By the end of our little chat we were all laughing and his wife was referring to me as his "sister".

I'm happy to share with people my experience and information that I have learned. I think that he left feeling very positive. I always carry a pen and paper with me and always make sure I give them my email address or phone number (sometimes). I just like to let them know that if they have questions or need some one to talk to they can reach out. In the last couple of years I've met 3 people in our county that have AT or AU. They have all seemed to enjoy meeting me.

It makes me feel good and I hope it helps them to know that they are not alone :-); ▶ Reply to This