Replies to This Discussion

Permalink Reply by Sarah on September 8, 2009 at 2:56pm

If I have figured this out, I would tell you. But I haven't.

I guess I've learned in my three years of experience that I probably never really will ever stop thinking about it.

Although, all my friends and family know my situation. I think maybe you just need to let loose and let people know who you are. If they don't like it or are weird about it, then they aren't worth your time.
Usually the first thing I talk about when I first meet someone is my Alopecia. That way they know and there are no surprises.

There are genuine people out there, few and far between, but it is worth every second when you can be yourself.

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Permalink Reply by Melanie on September 8, 2009 at 2:57pm

Naturally people are curious and will look/assume etc., but I believe there are plenty of amazing and wonderful people in the world who overlook characteristics we see as our faults and are able to appreciate the whole package. Although my son only started losing his hair a few months ago, I feel blessed in that I have a supportive family unit who continues to encourage him and he is still feeling confident at school. I'm not too sure what kind of advice to give, but from my viewpoint, we should all try to live with no regrets...and if that means getting rid of your wig and makeup and living your life authentically, as you see it, then you should consider it. Who knows, maybe opening up about your experience with alopecia will really provide confidence and motivation to someone else who is just starting out with it. The voice inside your heart is rarely wrong. Thanks for opening up about the way you feel...it really helps me to understand what my son may be thinking and feeling.

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Permalink Reply by Aimee on September 8, 2009 at 6:54pm

Wow, I can't believe you've been in the closet so long! I was diagnosed last year and am now bald, but wear wigs in public.

I tell lots of people. It's like I can't help blurting it out! Pretty much the only time I don't tell someone is if I'm in a hurry. I just bumped into an old friend who I hadn't seen in years, and she and her mom kept going on about my hair. I finally told them I have alopecia, and it's a wig. The DMV lady raved about my hair, and I didn't tell her it was a wig. So, I don't tell everybody, but more people know who don't.

Does anybody know??

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Permalink Reply by Kayla DeMarini on September 15, 2009 at 2:13pm

I think its probably very different being raised with alopecia rather than developing it when you are older and already have a firm grip on who you are...As a kid all you want to do is fit in and not be treated like a chemo patient and so you pretend and then sooner or later you cant decipher the pretending from the real you.

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Permalink Reply by Paulina on September 8, 2009 at 9:19pm

hi kayla
i've had alopecia since i was 12- for a year just patches that grew back, then universalis, then had periods of lots of growth but never completely- all through college i've been universalis. i'm just starting graduate school in boston and that's made me think about it more lately- meeting new people is always a bit nerveracking for me because there's going to be the eventual explanation of alopecia. i think we all think about it alot- that's why everyone is on here. it really affects most of our lives. I think the most healing thing for me is to try to fully embrace myself and get into who i am rather than be ashamed of anything. I work headscarves all the time up until about 2 years ago when i got my first freedom wig. In my experience being open about my alopecia has never made anyone thing less of me- it's only a new facet of who you are, just like everyone has. I try not to feel confined to my wig. I alternate between lightweight wigs, the freedom wig, hats, and scarves. I think we all have to do whatever we can to make it work for us in our lives- so that we can really feel like we are living and not just going through the motions.

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Permalink Reply by Dominique Cleopatra on September 8, 2009 at 9:35pm

I don't tell everyone, but would feel ok with explaining my situation to anyone who asked. I wear a wig and people may notice it's a wig, but I don't really care as long as I'm reasonably happy with my appearance. All my close friends and family know and in my experience they really don't give a rats patootie lol! They are really just concerned about their own "problems" and continue to appreciate me for the caring, fun, vivacious person that I am.

Perhaps, all this obsessing about our alopecia is a diversion (which I am also guilty of indulging i n) to obscure what really matters and to avoid thinking about other things that are even harder to face. Just a thought.

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Permalink Reply by Melissa Francis on September 11, 2009 at 3:12pm

Dear Kayla,

Your words about your feelings are too honest to come across as fake - it's beautiful that you allow all of us to share what you are thinking about this, thankyou for that privilege of knowing these things about you. :)

I checked your photo out :) what are you hiding for? (referring to the shadows mentioned...) You are, and will still be beautiful if you tell people the truth. And once it's out there, it's not going to be as dark and huge and scary :)

I have only recently dealt with the hysterical feeling of not being totally in control of what's going on with my alopecia, but something that helped me was to write down a list of things that I want to achieve in my life, and that I enjoy in my life. They are things like - finally recording all my music and completing an album... surfing... drinking wine with friends and laughing... sleeping in and snuggling late and then having afternoon breakfast with my husband... running with my dogs on the beach... All these things make me so happy, are what makes my life happy. And you know what, I don't need hair to do any of that...

Being able to speak words of happiness and positivity to other people and realising that I actually really BELIEVE what I'm saying is something that is important for me... Finding happiness in life is more important than worrying about what people will think about your skull. As Sarah (below) said, if she had figured this out she would tell you. But no-one can figure out how to make YOU happy - except YOU.

So... what are those things out there in life that you love? Find them and go do them... And then maybe there won't be as much space inside your thoughts to think about the alopecia...

Sorry to post so much, but I kept thinking about something Nelson Mandela said once... (please excuse the references to God, they are not the point of me including this quote)

"We fear that we are inadequate, but our deepest fear is that we are powerful beyond measure.
It is our light, not our darkness, that most frightens us.
We ask ourselves: "Who am I to be brilliant, gorgeous, talented, fabulous?"
Actually, who are you not to be these things?
You are a child of God.
Your playing small doesn't serve the world.
There is nothing enlightening about shrinking so that
other people around you won't feel insecure.
We are all meant to shine as children do.
We are born to manifest the glory of God that is within
us.
It is not just in some of us; it is in everyone.
And as we let our light shine, we unconsciously give other people permission to do the
same. As we are liberated from our own fear, our presence automatically
releases others."

take care Kayla :)

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Permalink Reply by Kayla DeMarini on September 15, 2009 at 2:16pm

Thank you, I really love the quote =)

especially "we are meant to shine as children do"

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Permalink Reply by Kayla DeMarini on September 15, 2009 at 2:24pm

Thanks everyone who replied =)
I guess i already knew what i need to do....and that is tell my friends and those around me about my alopecia but it seems so hard. i have been hiding for so long (i got my first wig in the 2nd grade). I know its a completely different thing, but it almost feels like im gay and too scared to admit it to others and admit to myself that i will never be what i want (which is "normal") to be and i need to play the card i was dealt with more grace and less fear. I cant live my entire life lying to myself.

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Permalink Reply by Aimee on September 15, 2009 at 2:31pm

Here's a thought as a way to "out" yourself: Put the Alopecia World badge on your Facebook, or become a Facebook fan of Alopecia World. Then when people ask about it, you can tell them. I'm considering doing it myself.

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Permalink Reply by BaldGirlsDoLunch.org on September 15, 2009 at 8:32pm

Hi Kayla,

No one is a failure because they decide to make a change and do things differently. It's not a personal failing to tell your friends you've decided to take a more open approach with alopecia....to use more options and to remove the debilitating burden of secrecy. Everyone can and does make mid-course corrections all throughout life. Have no regrets. Life in general and life as an alopecian woman is an ever evolving journey. It's not something to be afraid of. When you imagine telling someone about your condition and you sense inner fear, you can say to yourself, "well what is the worst possible thing that is going to happen?" Is there going to be a moment of trepidation and newness and nervousness? Likely there will be , but it will be fleeting and over before you know it. Wear a big smile on the outside and you will feel the glow inside and others will feel it too. It works. Nothing as bad as your imagination thinks is going to happen. Fear feelings are strong in humans and they do serve a purpose, but as human beings have evolved unfortunately we have strong fears for things we did need to fear when we lived in caves which serve us no purpose now.

Many use the opportunity of going to a Bald Girls lunch as their opener. They come to work the next week with a renewed sense of confidence and self assurance. Someone asks, " so did you do anything interesting this weekend?" and they can say they meet some women who gave them new perspectives. It's a chance to say I met other people like me and it was a refreshing experience. Breezy. Light. Informative.

What happens when you make the decision that you want to be more open so you can use all your options is that all kinds of opportunities arise that you hadn't seen before. You'd be surprised how many times during a week there are chances you can slip in something casual about having the convenience of doing your hair the day before, living a beautiful alopecian lifestyle etc. The key is keep it nonchalant and casual. No big deal. You can practice with a friend what you might say and how you might say it so it's gets easier and easier. We've rehearsed with women at our lunches, too.

The anxiety, anticipation and fear is far worse than the reality of talking to people about having alopecia. Other people truly are not so shocked shocked! as you might think. And they certainly will not reject you because you didn;t used to talk about your fake hair and now you do. If anything, there will be a collective sigh of relief that you at last are more relaxed. Other people feel your tension and even more so the more you're convinced you're keeping inner turmoil hidden.

At the bottom of the anxiety is the fear of being rejected, for at the core what everyone needs is to feel accepted. In this case, the fear is irrational but it is primal and strong. It will dissipate. It always does, and you will live the life of beauty and freedom you want. You will only feel relief from the burden you now carry that's weighing down your happiness.

There's no doubt in my mind you're going to be everything you want to be. You are normal now. There are countless variations of normal.

Allow yourself to enjoy being an alopecian beauty in the full sense of the word and you will grow into it and love it. You deserve nothing less. Women with alopecia should not be living stunted lives, yet the world is full of women living far short of their full potential. No one can do this for us. We have to do it ourselves....and grab each other by the virtual hand and get us all to the life of joy without regret.

Thea
baldgirlsdolunch.org

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Permalink Reply by Mary on September 15, 2009 at 3:19pm

Kayla, I'm sorry you're in such pain. All I can say is that for me and for many other women, the best course of action has been to come out. I lost my hair in Jan. 08, and sent out an email with photos to family and friends the day after I shaved. I tried wearing wigs for a number of months, and then just started going everywhere bald. It wasn't easy, but I'm fine with it now and never have to worry about anyone "finding out". My attitude in public is: "Yes, I'm bald ...get over it!" That was my idea behind creating The National Bald Out - that women should have the choice.

I know this isn't for everyone, but it has made a huge difference for me. I feel in control after many years of feeling that the alopecia controlled me. Yes, I wish I had my hair, and I still get angry and depressed about it at times. But, this is just who I am now, and life is good.

Take care,
Mary

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