Alopecia World
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Feeling defeated, frustrated, and depressed
Every time university is about to start up I start thinking about how I'm going to be wearing my wig everyday and how I am pretty much lying to everyone that I meet by hiding the real me. It's so frustrating because I've gotten so used to being bald at home after almost eight years, but I'm still terrified of letting the cat out of the bag at school. I'm so tired of trying to figure out when to tell people or if I should tell people. I hate that I let my alopecia limit what I do, but I just can't stop worrying about what I would do if I got a really negative response in a place where I have to go to everyday. I love playing soccer and a lot of other sports, but I've never actually used my campus recreation center because it is just too hot wearing a wig and I'm too petrified to go without it. I have lived in georgia for 5 years now, and I still haven't managed to tell any of my friends about my alopecia (although they probably have guessed by now since I have an identical non-alopecian twin). I have a thyroid disorder as well which can cause depression so maybe that is what's talking right now, but either way that's the way I'm feeling right now. I have so much resentment for my twin because she didn't get alopecia so the "why me" attitude is going crazy right now and I don't know how to shut it down. I just don't know what to do anymore. I feel like my life is just passing me by because I'm too scared to fully participate. I feel so trapped, but I'm also disgusted with myself. It drives me nuts that I still can't just move on after all this time. Sorry for the rant I didn't feel like making my family feel bad because they can't do anything to make it better.
Replies to This Discussion
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Permalink Reply by lovelyjan on
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I totally agree, living without fear of people finding out is an amazing thing. I must say my biggest fear, was on today, school started and the students seeing me for the first time without the wigs,but I was surprise at their reaction,I could see very little smile on the faces of the students,I sure wondering in their minds what happen,So I thought to self what a chance to raise Awareness,so the educating begins. Morning route was great, afternoon is another test.:)
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Permalink Reply by Susan P aka DGADBS on
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I feel for you, hugs! It's not easy going out in public bald for the first time. I find it much easier with a friend by my side, I can go anywhere bald and confident with someone beside me because I forget all about it. I decided from the start that I wasn't going to wear a wig, it feels nice being bald as you already know. If you could just get over this first hurdle I think it would take a lot of your worry away don't worry about the negative responses until you actually get one. You can't worry about something that's never happened or may never happen. A lot of my first compliments were "you have such a nice shaped head" which sounds funny but people truly wanted to compliment my new baldness. Do what makes you happy, don't let this limit the things you love to do. Tell your friends they will be glad that you are being honest with them (as I'm sure they know something up) and after awhile they won't even notice anymore. After a year of being bald no one even notices anymore, because I don't notice it anymore.
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Permalink Reply by MiNAH on
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I embrace all peoples differences, yet we must understand that when people are in groups of unknown faces, we need to be aware. Not make their presence "OUR" thoughts and our life, as though they come home with us. As though they share our dreams, our fears, our tears and our joy. People ... are people without a face, people are faces in a crowd, faces which walk right by us without another thought. People, people, people, who gives a hoot about people, when they are not walking in our shoes ... when they do not understand our plight, or frustration. Who cares about people, their thoughts about hair loss or how they feel about us having no hair. "Who cares about people". Where is it written that one must answer to peoples insecurity about our hair loss? I never, feel the need to explain myself or answer to the ignorance or questions of peoples lack of understanding or knowledge. Why should I worry about people? People have no face. People walk right by us. People don't stop to carry our heartache or load. So why worry about people? People don't care whether we are lying or not. People don't care whether we are covered or not. People only feel the power if we give ours away. People feel the power when we explain our self. People don't cry because we cry. People don't stop to think about our daily dilemma in regards to hair loss. People don't think, and stop their life to think about our sadness. We only do all the damage to our self. Our thoughts and our stories that swim around in our own head. It is not people who are causing our problems of insecurity. It is "US' who feel that people's lives might be changed or disturbed because of an encounter with THE HAIRLESS WONDER" People think it can't happen to them. Do you see how senseless it is to worry about "PEOPLE" The fear is within us, the fear will continue to hold us down, lock us up, and the fear will keep us prisoner in our own life. So free yourself from the notion that people spend time worrying about our hair loss. They do not care, and they are not going to understand. If you can tell yourself these things, then you will be enlightened. Remove the band aid which suffocates our thoughts, which controls our life and the freedom to be who we are. We do not owe anyone an explanation with guilt attached to every word, waiting for acceptance. The only way to face the enemy is to fight, and to remove the cloak which we hide behind. People care when they know you. Some people care with pity, and sorrow ... so why wait for the wrath to devour your spirit, esteem and self worth. Go... live your life ... it is our "HUMAN RIGHT TO BE FREE" Not to hide because of PEOPLE!
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I feel stronger already! Double Amen.
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Permalink Reply by Mary on
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OKAY - HERE'S MY LATEST EXPERIENCE which may help. I just got home from the big supermarket near me. I was bald, as usual (except in the cold sections of the store, where I put on a cap that I carry in my purse for this reason). I was loading my stuff into my car in the parking lot, bald, when a nice-looking 35-ish woman in the next aisle of cars shouted to me "You're beautiful!" I thanked her, and we talked for a minute. She was absolutely sincere, and I didn't get any feeling of "pity". Sure, at first, she probably thought I had cancer. But, she obviously thought the look rocks, and told me she admires me for being myself.
I have had MANY more experiences like this than I've had negative experiences in my 3 1/2 years going "out". (See my blog about getting free jewelry from strangers.) I can think of less than a handful of negative experiences, and can't remember how many I've had like this.
Mary
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It was very different during the early 80s, when it was hard renting homes to "PEOPLE LIKE YOU" Ugh, this was a line that I experienced a few times. The message was around the same in many places I went to. I did have negative responses. I couldn't get on a bus or I was screamed at with profanity. I was approached my men who asked me "WHAT ARE YOU ... A MAN OR A WOMAN? "Wouldn't get served in restaurants or stores ... had to open my mouth and speak out, speak up! Had drinks shaken up over me, spat at me and an array of ugly hurtful events. Although, I realize it was the ugliness of others and I had nothing to be concerned about. It was ignorance of the times and it was them, their inability to understand or accept change and an evolving new world. A new way of seeing people with differences as diversity in appearance.Yet, I wasn't strong enough inside. I may have walked bald, although inside my heart was torn, I was sad angry and in emotional pain. I truly believe that I played a big part in the impression from others. How they felt and received my energy. I was outward smiling and happy. However, it's something people can pick up on when you are feeling insecure within. "TODAY" is entirely different and as Mary has mentioned, there seems to be such an openness, acceptance and understanding or willingness to open up in a positive way towards hair loss. Most people are curious and complimentary. So I don't much worry if they think I have a serious disease, it is what they know right now, and I understand why they relate "BALD to CANCER". Although as I said, people in a crowd ... who have no face, don't have a negative or positive effect. As they are not relative to your plight, your life and your existence, just as they aren't any of these things to you. So to carry any shame or burden over people, seems like such a hopeless waste of energy and time. "WOULDN'T YOU AGREE?" I will let them know if they ask, and it is a stranger who always cares, who will never pity hair loss because they may not be aware alopecia exists. This is why I say to all who fear ....it is your own internal struggle, your own fear and worry which holds you back. Your fear can be changed in a few minutes. Not to say that you won't have other insecurities to overcome with hair loss and new situations about self will arise. Yet in reality, you will have climbed one mountain and conquered the world. Alopecia is so prevalent. It covers vast lands and distances world wide. Then what is the reason you continue to hide, feel shame, or hold back with covering up, when as they say "THE WORLD IS YOUR OYSTER" Go forth and conquer, is a powerful achievement. So why continue to hold on to something you have control over. It is your emotion, your cloak which hinders your progress and happiness to experience life to the fullest. "NOBODY ELSE TO BLAME" In fact it is our greatest gift to be the chosen ones. It is only your demise, if and because you think of yourself this way. It is only your problem because you tell yourself it is so. You are your own worst enemy. You will not be free until you find it within your own blanket of security, to wake up from this dream and whispers you so tell yourself. It is "YOU" who stops yourself from fulfilling gods wishes to live your human right to be free. It is only you and nobody else. It is your own doing when you hide if fear and shame. "STOP THE TEARS AND FACE YOUR FEARS" So this is why I say, in your own mind."FORGET ABOUT PEOPLE WHO HAVE NO FACE" As I feel the more we as "THE CHOSEN BALD" enable stupidity and negative perception, the more we shall continue to feel shame. Face Fears, and find out that the People without a Face are not going to change your life in any way. Rather, you will come to find, the more you release your inner confidence, self worth, people will gravitate towards you in acceptance and tolerance. With the changes they see in you and the new "ORDER OF HOW ONE MUST LIVE WITHOUT HAIR". One will come to appreciate, learn about an evolving difference and beauty amongst each other throughout this vast world! Finally put stupidity of shame to rest......
Every day I go out into the world without head covering, I am teaching the world to accept others as they are. They have an eye opening experience and may not even be aware of it. Eventually this shall grow and grow and continue to grow. The thing we must do is disrobe and allow others to see the real you, the real us. We are the teachers. If you want something to change ... we must stop enabling this situation and ignorance about hair loss, to continue. "IT IS IN OUR HANDS" .... WAKE UP GUYS!!!!
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How awful that it was like that for you then. I got a small taste of that in Indonesia last year - though most of the people weren't mean, there were some who just couldn't accept the way I looked.
It IS in our hands...this is what I keep saying. IT WON'T CHANGE UNTIL WE CHANGE IT.
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So right Mary ... so very true. Everyday I feel as though I have been rewarded with this amazing gift of self. Knowing exactly who I am and how I must approach my life in the world.
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Permalink Reply by Marie on
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Hamlet might say, "To go bald, or not to go bald. That is the question."
Butl, actually, it's NOT the question! The big decision is whether to tell people or keep it a secret. Women have to ask themselves if they will allow Alopecia be a part of the person they present to the world but somehow not let it define them. Can you do that? The person you might need to stop keeping a secret from is, perhaps, yourself. Alopecia is not who you are, but it contributes to who you are, and I think that people would probably like to know the whole you and would value that level of intimacy in a friendship. True friendships may require that!
And, frankly, it is not realistic to imagine people will care about your Alopecia as much as you do. Once they know, people of your age are not going to dedicate a lot of their time to thinking about your Alopecia -- they have classes, finals, friends, families, a social life, jobs, etc. to keep their minds more than occupied.
The thing to really learn to accept is that there is no shame in having Alopecia but the shame we ourselves percieve. I believe that for the most part you determine the reaction of others. When someone finds out that you have Alopecia, the first thing that will go through their mind is "How should I respond to this?" Should I be shocked, sympathatic, embarassed, patronizing, concerned, nonchalant?" They will be terribly uncomfortable until YOU lead them and let them know the answer to that question. If you feel and act like it is a horrible, devastating, demeaning secret, that is how they will act. If you are confident, happy,and comfortable with it, they will be as well. Additionally, If you answer their questions with ease and grace, you will help them to see your Alopecia as no big deal.
I don't think the question of wearing wigs is black and white. Once you are open about having Alopecia, you can choose to wear a wig some of the time or all of the time. You can chose to go bald all of the time or some of the time. You can wear a wig whenever it makes you feel comfortable socially, and you can go bald whenever it makes you feel comfortable physically. You own your Alopecia, and you can do with it what you please.
There is one thing is for sure, having Alopecia is NOT for sissies! It requires strength of character, fortitude, understanding, poise, generosity, perspective, and a sense of humor. (Gee, aren't Alopecians wonderful?)
As Lady Macbeth says in Act I, "Screw your courage to the sticking-place, and we’ll not fail. "
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"If you feel and act like it is a horrible, devastating, demeaning secret, that is how they will act. If you are confident, happy,and comfortable with it, they will be as well. Additionally, If you answer their questions with ease and grace, you will help them to see your Alopecia as no big deal.
Everything you wrote is great - but this part is absolutely important, so I will repeat it. What you describe is exactly what I have experienced. Thank you.
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