Living with alopecia my whole life has, I think, left me with some personal privacy issues.

I do things like:
-lock the bathroom door, even if I'm just blowing my nose or brushing my teeth
-lock my bedroom door when I'm leaving the house
-lock my bedroom door when I'm in my bedroom
-I let my boyfriend see me with my wig on, with the wig off, but never *just* the wig. He knows I wear one, but I don't want him to see it
-I hate it when people drop by unannounced. Even when I had totally re-growth, "surprise" visits always made me stressed out to the point where I actually panic
-When I stay with friends/family and have to share a bedroom or stay on a couch, I end up awake all night afraid that my wig will fall off if I go to sleep

Does anyone else have issues like this??? I'm trying my best to outgrow my issues, but I've found that so much of it is ingrained in my behavior and mentality after 25 years :(

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Male- 26

Yup, I had lots of these experiences I'll start by sharing one that took me I'd say 8 years to overcome.

When I was around 7 years old I started wearing a hat to cover my head. I seriously couldn't go to school without my hat. In fact I'd wear out my hats so fast if it ripped and my mother couldn't afford to get me a new one right away. I'd fight to stay home. She'd finally get me a new one. I remember when I had to change in the locker-room and would have to remove my hat as quickly as I could so nobody could see my head. To make a long story short it started to get worse, I couldn't let anyone see me without my head covered. Locking my door while I slept so that If someone knocked I could quickly grab my hat. Taking a shower and placing my hat in a easily reachable place. Avoiding sports or overactive outgoing entertainment. I hated when my hat got all sweaty. The list goes on and on and gets worse. Not to mention people that would think it funny to take away my hat and have me race after them when I was in elementary school.

The point is I had to take control and not allow myself to be attached to an "item" I remember the day I woke up age 15 shaved the spots that we're growing hair. Looked at myself in the mirror and said this is going to be the day I stop wearing my hat and accept who I am. (Well It was more like shouting within my brain I got to do this for myself) I opened the door to the world everything seemed so bright, maybe that was because my hat provided shade. I started walking down the street got half way to my school and broke down, couldn't move or take a step closer. I ran all the way back to my house went back to the mirror and put my hat back on and cried some more. As I approached the door to exit my house with my hat on, I just couldn't do it I ripped my hat to pieces and walked to school late. Entered the office, Bald as can be eyes noticably red. Walking into class while everyone looked at me some people didn't even know who I was.
My Life changed forever. I grew so much that year and started having girls want to be my girlfriend. My confidence raised to levels I didn't know possible. I started to like how I looked without wearing a hat. I felt stronger no longer crippled by my false best-friend (hat)

You might not want to go around bald like I did. I'd say start with family, lovers, and close friends allowing yourself to be seen. You know it makes people feel special to know that your only revealing yourself to them. Ingrained behaviors have always caused me a lot of stress and sometimes tears. Allow your ingrained behaviors to become positive rather then negative. The area's within your life where the behavior is negative focus on reducing the impact on your life. And the area's where you have positive acceptance and peace to show and be who you are. Run straight into it and welcome the acceptance that you will "GET" . I'd say for me when I first experienced love it was great to know the woman I was with totally accepted my bald body, and loved it.
I am excited for you, because I know how happy you are going to be when these issues start to disappear, They wont last forever you'll either be forced to give them up or you'll get mad, anger will turn to rage. Release will become the only option. Breathe deep and visualize the acceptance and remember to smile at the faces of our issues.
Good luck...
What a heart-warming story! Thanks for sharing it.
Hi Bobby-

Thanks so much for sharing your valuable experience.

There is a thread on another alopecia message board where the mother wanted advice on which wig to buy her 7 year old son because he wanted one. As I recall he has aggressive patchy aa.

I replied emphatically "no wig" for a 7 year old boy and quite a few people jumped in to ask me why I took that stance. They said the boy should have whatever he wants.

Some of my reasons were that it would increase teasing/bullying; kids need to be free to play and not be restricted in any way ( mentally or physically) from being active; talking openly about alopecia is healthier for families and kids' coping overall. I suggested asking her son to agree to wait a set period of time and revisiting the issue since kids are fickle. Or, get the wig if she must and let it play out as it will.....and let her son decide on his own after wearing it if he still thinks it's what we wants...under my assumption that he would make his own decision to give it up when teased or annoyed by it.

I will refer them to this thread and wonder if you have other thoughts to add.

Thea
BaldGirlsDoLunch.org
My mom asked me if I wanted to wear a wig. So we went out and purchased one. And because I was young my mom decided that I should only wear it inside get used to maintaining etc. She told me after a couple months if I wanted to I could start wearing it in public. Frankly It was itchy and very hot wearing it. I recall the memories like they were yesterday. So after a week of wearing it inside I decided I don't want a wig. I was a kid so I played with it like a toy Look mom I woke up with hair this morning, Doh it just fell out.
Seriously, If he wants to wear a wig, and he is very young, you should allow him to master control of learning how to wear one at home; however, I work at an Elementary school if your son is bald then comes to school with hair one day. Lets just say bullying and stuff will start. I'd recommand him being able to wear a hat to school, and if kids ask him why he is wearing a hat. Maybe he can tell them he's starting to grow his hair back. and it looks funny right now but in a couple of months it should be regrown. He will need a really expensive durable one that he can have freedom and knowledge that if another kid pulls on it or he is doing sports it will stay on.
Talking to a professional, would be great to do. Maybe work at a step by step progress. Afterall what would be the use of a wig if it isn't going to provide the mental secruity he wants, of feeling normal.
I can understand the many problems that you face, I tend to wear a baseball cap all day,never socialise,avoid parties and many other situations. Acceptance is tougher than non alopecians realise.

Kenny j
Hi Kenny-

I feel like giving a little pep talk..so here goes:

You gotta get out there and show everyone else that being bald is just one more way of looking. I do. People like me or they don't. What is on or off my head is irrelevant. For those who don't know about the condition, just get down a concise sound bite to explain it or give them a little info card about it. Truth is most people will make assumptions about our health and we do have to educate them, but no big deal.. that's just the way it is. Your friends will pick up their cues from you...and will be delighted to have you back in the social loop. They probably feel a bit sad/frustrated/helpless ..they want to do something to help you get back into regular life again but they don't know how. I say, just jump back in again and they will be happy and relieved and so will you.


There is only one person you do have 100% control over in gaining self-acceptance of a new self-image and that person is yourself. In my opinion, when alopecians look to others for acceptance first, it's a natural reaction, but it's actually doing it backwards. Sure, I , too, did it myself because at first it is normal to do that. When I had a new diagnosis my mind kept focusing on others and what they would think...but that was because at that time I didn't have a clue what I thought or how I felt about it. It took time for me to even realize what was happening to my self image. I decided to take it step by step and give myself adjustment periods. It was only after I was looking in the mirror, shrugging my shoulders and saying "you, girl, get in the driver's seat on this", that the anxiety of what others might think completely dissipated. From then on I had a new attitude and a newly liberated life.

Other people will take their cue from you...so it really helps to just bite the bullet that first time, go out bald, hold your head up high, put on a smile ( fake it at first if you have to) and just pretend that you are exactly the same person you always were...because you really are.

I do that... I just walk into new situations and carry on like there is nothing unusual about seeing a bald woman .....why? because my life for me needs to be that way. Decide what you want for your happiness and show everyone else......you can be sure they will have every desire to jump on board with you. Why wouldn't they?

All the best,
Thea
www.baldgirlsdolunch.org
Kenny, PLEASE take Thea's excellent advice to heart! She is so right! I have AU and go everywhere bald - with friends, and with strangers in public places. I do exactly what Thea says - I carry on and interact with new people as if there's nothing unusual about me, because to me, there IS nothing unusual about me!

I choose to be who I am, and in a year of being "out" in public bald, I haven't had a single bad experience. It was harder to hold up my head put on that smile and project confidence at first, but now it really isn't a big deal! I'm free, and no one can make me feel ashamed or embarrassed. I made business cards about alopecia to give strangers who inquire, and I sometimes have to explain. But, it's not a problem for me and I actually think I feel special with other people because of my "difference".

If you haven't seen my video, here it is...this is how the world sees me everyday, and it's fine:

http://www.youtube.com/watch?v=VG-OK3-YG8w&feature=channel_page

Hang in there,
Mary
The last two I completely understand, and I am the same way to this date. I really do panic when the doorbell goes off and I'm not expecting it!!
I guess I dont have privacy issues...
I dont lock the bathroom door and I sleep with my bedroom door open.
As far as unannounced visits, Miss Manners says no way on that one. That's the door I don't open.

Jeffrey
I feel exactly as you do, Dom. Once I took the attitude that I'm fine and other people should just DEAL with it, all my apprehension about being seen as I am vanished. My attitude is "Yes, I'm bald, get over it!" I've really come to feel that the way I see myself has a great impact on how others see me.

My attitude in public is summed up by my new T- shirt: "Bald? So What!" (available at www.baldgirlsdolunch.org under the National Bald Out section of Logo Products.) You can see a photo of me in it on my Profile page.
Yes! At first, when I went completely bald, I let NO ONE see my bald head. Even the first time I went wig shopping I was shy in showing the salon lady my bear head.

Slowly though, as more people i am close to is aware of my condition, I let them see. My best friends, the ones most close to me, have seen me in my hairless glory - and the REALLY REALLY close friends and my boyfriend have seen me sans eyebrows and eyeliner. Its a huge step.

I have found that i am most uncomfortable with STRANGERS seeing me bald than i am about my friends. For instance, i had a superbowl party and wore one of my newer wigs, that doesnt have a lace top - and since i was running around getting stuff ready i forgot to put my tape on to secure it. It ended up coming off briefly when i went to lay down on the carpet in front of the tv. VERY embarrassing. but it was embarrassing because there were people there that i didnt know well that were invited by my boyfriend, and i didnt want them to judge me. I just am not comfortable with people judging me without knowing me.

so while i will walk around bear-headed with my boyfriend (and sometimes my immediate family) i prefer my little hats when im not wearing my hair, mostly because i know i look different and when youre not used to it, a bald woman (sans eyebrows and eyelashes) brings questions of "what kind of cancer do you have" or "oh my whats WRONG with her?" and i would rather not have to explain that to a stranger.

now who can go swimming sans hair? i have yet to figure out a way to get into the pool or go to the beach. i havent gone in 5 years because of it.
It makes me so sad to think of women not swimming or doing any activities because of having no hair.

When I lost all my hair in January 08, I decided to go on with my life and be proud of who I am. I go to a health club (big pool and hot tub and also the exercise room) bald all the time. What I've learned is that IT'S NOT A BIG DEAL if I don't make it a big deal! I go folk dancing and ballroom dancing bald. I go everywhere bald....it's who I am. Why should I have to hide it if bald men don't? I get compliments, and yes, I get cancer questions.

Every time I get asked if I have cancer, I'm grateful that ALL I have is Alopecia! I lost a friend to cancer last year, and have another now who's seriously ill. I'm healthy and can do anything I want (bald scuba diving is great - see photos on my page.)

Living my life in comfort and not limiting myself is just more important to me than people seeing I don't have any hair. It may not be for anyone, but it works for me, and I hope more women give it a try. (See my YouTube videos "Living a Bald Life" and "Announcing the National Bald Out!")

All the best,
Mary

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