Everyone always thinks I'm going through cancer treatments

Do most of you get approached with questions about what kind of cancer you have just because they see you are bald? It happens to me every time! It's frustrating to explain every time!

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Permalink Reply by Lori-akaMimi on October 5, 2014 at 10:24am

Aw, thanks BLee. She is doing GREAT! She is one strong, confident little girl!  She had very little hair left, and SHE decided to "be the boss of my hair" and shave the rest off  <3  When it was gone, she declared, "I am a strong kid! I am ME - and I like my bald head!"  She marched into class the next day with a smile on her face. Most all of the kids we have encountered have been wonderful - asked out of curiosity only. Just yesterday, she met a boy at the park who eventually came to me to ask if I knew "why she was born without hair." I explained. He then ran off and gave her the friendship bracelet from his wrist (melted my heart). There have been 2 minor incidents of laughing, but she was more annoyed than upset by it! She'll have rough patches at times in her life, I'm sure - but, with a little help, I know she'll come through whatever is thrown at her!

Permalink Reply by BLee on October 5, 2014 at 6:16pm
That's so awesome! I'm sending strength for her through my text!!
Permalink Reply by BarbaraK on October 5, 2014 at 10:15pm

@ Lori-akaMimi That is awesome to have that positive attitude whether as a child or as an adult. I am new to Alopecia World and I was recently diagnosed with Alopecia Areata and although I didn't lose my hair entirely, I too decided to shave my head. I am slowly learning to basically love the skin I'm in because it's my head.

I would rather be bald or have my hair as short as possible then to have a lot of hair and see the bald spots. I think seeing the patches or bald spots is more distressing than Alopecia itself.

Kindest Regards

Permalink Reply by Magdalene on October 5, 2014 at 11:07am

It happens all the time, and sometimes people seem dissapointed when I tell them I´m all healthy, like, one shouldn´t look sick and be healthy.  I wear scarves or nothing.    

Permalink Reply by BLee on October 5, 2014 at 6:20pm
Hi Magdalene, so true! I get the same impression when I tell them I don't have cancer and not receiving treatments! It seems it's ok to be bald as long as your receiving treatments for cancer! It's like they don't think it's hard for us with no hair because we are not sick! Weird huh!
Permalink Reply by BarbaraK on October 5, 2014 at 10:17pm

I was recently diagnosed with Alopecia and prefer not to wear my scarves unless it's cold which it is usually not in Miami. I am learning to love how I look

Permalink Reply by BarbaraK on October 5, 2014 at 7:24pm
I was at a grocery store and a man thought immediately that I had cancer and started telling me about a walk for a cure.
Permalink Reply by Rose Marie' on October 5, 2014 at 8:08pm

The minimising of alopecia is the difficult thing and I really understand how annoying it can be for that to happen to anyone dealing with alopecia.  

In NZ we have a 'shave for a cure' ...really great charity for cancer and I support their initiatives as it really has bought a lot of support their way.  Looking at it from the point of view of the person with alopecia it is possibly not overly supportive of the reality of Alopecia as a condition.  The lack of hair is horrible and difficult to manage, but for those that choose to shave their head (the lack of hair has already been considered and controlled with a known outcome - future hairgrowth and back to normality).  The shaving of your head in these circumstances is held up as an enormous sacrifice which people are applauded for. I fully understand this and feel it is a great awareness campaign.

But for my daughter her feelings around people doing this type of thing is very different ...

We have discussed this extensively and she explained her feelings around this eloquently.  She would never want someone to shave their head for her....that is a choice and she doesn't have a choice around her hair growth.  So, for somebody to take away their hair to look like her for a short amount of time is actually painful for her as she wants them to keep their hair and because doing that does not adequately explain her loss and in reality minimises some of what she is going through.  (even though it would be totally unintentional and mostly done to support...for her she would prefer this never to be done for her sake). 

The alopecia reality is very different and not well understood. The reality for my daughter is this. It is not just hair but a vital loss of control around how she wants to look.  Nobody who has alopecia has said, 'Pick me'. This is something that has happened that people have to find there way around, it is more complicated than hair...it can translate into who you are....or who you don't want to be.  It can be a long complicated  journey to reach your own comfort zone around it.  We all know it is a big deal.  I think that is the challenge for those with alopecia.  To help people understand that this is not just about the lack of hair it is also about the lack of control on how you present yourself 'forever'.

So, when people say oh, so you are fine - your not sick etc.....you may need to state your truth...whatever that may be.  If you are happy and self assured without hair -state it. If you feel that alopecia should be understood as a condition that can be very difficult to manage but you are doing fine managing it - say it...whatever is your truth ....get it out there.

Alopecia gives you very few options on how to handle it....cover or don't cover.  If you cover ....you have to decide what works best for you, scarves, wigs, hats.  No matter what you pick you still have to deal with having alopecia ...which is difficult. :(

Rosy 

 

Permalink Reply by BarbaraK on October 5, 2014 at 10:28pm

Wow! Rose Marie, I love this. I was recently diagnosed with Alopecia Areata and while I didn't lose all of my hair, I did lose my hair in spots. I chose to shave my head. I am happy without the hair that's missing, (I hope that sounds right). Although there are times when I am around people for the first time even those that I know I do feel self conscious about how I will be perceived or what they will think of me.

But after a while I have no problem taking off my wig, hat, or scarf or whatever and showing my head. But, hearing the term "Alopecia" in whatever form is hard to hear.

Permalink Reply by BLee on October 6, 2014 at 8:44am
Hi Barbarak,
I'm glad you have joined our discussion. I'm glad you are able to go without cover so soon! I wish I was that brave so soon! I have been dealing with total hair loss including eyebrows, eyelashes for 26 years! It took me this long to talk to others with alopecia! I feel like a new person knowing I'm not alone! You sound like you're handling it very well already! So glad! How old are you?
Bren
Permalink Reply by BarbaraK on October 6, 2014 at 12:43pm

BLee, Bren,

I am sorry you have had to deal with total hair loss, but, thank you for talking to me about it. You are very brave and you don't know it. It's so brave of you to tell me about your hair loss and you and I can hopefully become new friends here. I bet you are beautiful.

Everyone has their own time that they are ready to step out without cover and there will be people who will judge or stare, but, you need to love the skin your in literally. I too have my moments, where I get agitated and where the word "Alopecia" really gets to me.

Please feel free to contact me either here or on Skype or Facebook or whichever you choose. I'd like to think that I am the type of person that another person can confide in. I don't judge or at least I try not to, and I am always open to learning.

One thing that bothers me about other people is when they stare, especially children. It's like they have a question or questions but are afraid to ask. I am 31 years and not ashamed to say it. If you don't mind me asking how old are you? You don't have to tell me if you don't want to.

Permalink Reply by BLee on October 6, 2014 at 1:18pm
Hi Barbara, I would like to be friends and share my stories! I'm new to this website too! Still trying to navigate it! I'd like to invite you as friend as soon as I figure it out! Lol! I am almost 51. Birthday I'm December! Funny I have had alopecia almost as long as you have been alive! Thank you for your kind words! I feel I am very beautiful but feel most confident with hair and makeup on! As a child growing up I had fine hair and long eyelashes and thick eyebrows. I never wore makeup until I lost my eyelashes! I was 24! I was very popular I'm school sports and a tomboy! Still sports minded but I like to look like a woman now! Well I could go on and on! Hopefully we can share more one one if you like?
Bren

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