personal privacy issues

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 :(

Views: 90

▶ Reply to This

Replies to This Discussion

Permalink Reply by Joshua on March 7, 2009 at 11:33pm
Hi Casey,

I must admit that I have quite a few similarities with you. Those among are:

-lock the bathroom door, even if I'm just blowing my nose or brushing my teeth ( I dont even feel comfortable even if I'm just changing a T-shirt, I would definitely find room)
-lock my bedroom door when I'm leaving the house (More of a safety measure, as the crime rate in my neighbourhood is terrible)
-lock my bedroom door when I'm in my bedroom
-I hate it when people drop by unannounced. Even though I have no problem at all being just me, "surprise" visits always made me stressed out.

I am okay in socializing and when it comes to privacy...I pretty much like to be left ALONE! I'm not sure its just a harmless personal preferences or as an result of alopecia. Not sure...on that...any comments?

Take are Casey. Thanks for sharing your stories.

joshua
http://joshuablogspace.blogspot.com
Permalink Reply by Mary on March 24, 2009 at 11:58am
If covering up at all times is the best strategy for you...that's your choice, and I respect it. But, when I read these horror stories of fear and anxiety and stress over concealing baldness, it makes me SO sad that I feel compelled to write. I choose to live my life openly, as I am, bald or in a nice scarf when I need warmth. The day I shaved my head, I sent photos to family and close friends by email. The day after I shaved, I taught my dance class bald. It got easier every time I went out in public bald. I hold my head up, wear great earrings, smile, and project confidence even when I don't always feel it.

I tried wigs and can't stand the heat and itchiness. For me, being open about my baldness has been the best choice. I never have to worry about anyone "finding out". I NEVER have to conceal or feel ashamed or embarrassed. Everyone - family, friends or strangers - knows, and it's just not a big deal. It's who I am now. My attitude in public places can be summed up (I need to put these on T-shirts): "Yes, I'm bald...get over it!" and "Life is too short to wear a wig."

IMAGINE a world where it's just as much an alternative for women with hair loss to be seen bald as it is for men. Imagine a world where you can be cool and comfortable and unstressed about what's on your head at ALL times of the day. That world exists RIGHT NOW. It exists for all men and the few women who choose to live in it.

The only way bald women will become less of an unusual sight is for bald women to just do it. You won't believe the freedom and relief of anxiety; you won't believe the sense of control of your life.

Check out my YouTube videos "Living a Bald Life", "Alternatives to Wearing a Wig", and the photos I've posted on my AW page.

I wish you all the peace I've found with this.

Mary
Permalink Reply by Kerry on March 24, 2009 at 1:14pm
My husband has had a.u. since he was 18. He used to wear a cap at all times, even go so far as to wear fake glasses so people wouldn't see his eyebrows were gone. Then I met him. He was 19 at the time. I asked him why he kept his head covered? He said doesn't that make you sick to see me like that? I replied, " I love you, not your hair!" I never got to see him with hair, and I don't care if it ever grows back!! Hair is not what I fell in love with it is him!! Now, I have to get onto him to wear a hat in the sun, because of sun burns. I promise life would be so much easier for you if you can get passed your issues. People love you for who you are not your hair!!!!
Permalink Reply by Pat on March 24, 2009 at 11:27pm
"i promise life would be so much easier for you if you can get past your issues." i think that applies to all of us with alopecia and without in every area of our lives. i also think it makes light of the condition. i also think that it is so easy for someone with out alopecia to say that. i also think that people loving us with or with out hair is not a question. at least not for me, but i cant speak for everyone. for me it has alot to do with simply the change in how i look,self image and how i feel. i am sure that if you were faced with something that drastically changed how you look, you wouldnt see it as just an issue to get pass. now every one here with alopecia that has decided not to wear wigs scarves or whatever and have found freedom in that, i applaude you and thank you for all of the encouragement.for everyone on here still believing, praying and getting treatments i applaude you for not giving up.
Permalink Reply by Danette on March 24, 2009 at 8:17pm
I had almost total baldness 9 years ago and I did a fair amount of covering up with wigs and scarves - but I was also known to pull off my wig and make a joke about tearing my hair out. People liked my sense of humor and it made them feel closer to me.

I started losing my hair again a few weeks ago and I started feeling "bad" if any bald spots showed - like I had done something wrong. After a few days, I thought - what is wrong with someone seeing a bald spot? Why do I feel ashamed like I have done something wrong to let it show? I am trying to get over that now - as I don't know whether I will lose enough to wear wigs soon or not.

I guess I must admit that I did not enjoy looking in the mirror with my almost bald head. I feel like I looked like one of the Three Stooges because I had only hair around the bottom of head in the back. Perhaps I just felt self-conscious. I think I worried about not feeling sexy without hair.

I guess I am sharing because I think we all have different motives for being private and we have that right. I hope that I will cope well no matter how I look. I am very glad that I still have nice wigs from the last time - so I don't have that to worry about.

I hope if any of you feel ashamed or embarassed like I have, you will realize that you have not done anything wrong. If you just want to feel protective of your privacy because you feel more attractive with hair - that is understandable. There are many women who won't let anyone see them without perfect makeup - even if they do have eyebrows and eyelashes and hair!
Permalink Reply by Danette on April 3, 2009 at 11:31pm
I guess I have more problem with the uneven eyebrows and eyelashes than the head hair. I am not afraid of what others see or think, I find that I don't like to see my eyebrows that way. I just take an eye brow powder and brush it on so I don't looked washed out to me. The funny thing is that I didn't wear any makeup last time I went through this. I just started wearing makeup about 9 months after I lost some of my eyebrows and eyelashes last time. My skin has always been so rashy, so makeup didn't make sense.

One thing I love about this support group is that i went quickly from feeling a sense of loss and disappointment to feeling like I am just one of many people tacking this non-life-threatening issue.

Thanks for the support!
Danette
Permalink Reply by Mary on April 4, 2009 at 10:49am
Hi Danette,

That's why I rather quickly went for tattooed brows...I didn't want to see that washed-out look in the morning or when the powder came off, and I've never worn makeup before.

Mary
Permalink Reply by Danette on April 4, 2009 at 9:21pm
You look good like that! I posted before and after pictures of me with and without my makeup today. I have not lost enough of my hair to wear a wig (or even go bald) or enough eyebrows to get a tattooed brows. So far, makeup makes me feel better about how I look. I am so in between right now!
Permalink Reply by Mary on April 4, 2009 at 9:39pm
In between is hard. I'm actually glad my hair went so fast, and so completely, once it started to go. I went from having full eye and body hair with only some hidden bald patches on my scalp in November, to shaving the last scalp hair in January, and losing the eye hair and all the rest by April.
Permalink Reply by Danette on April 4, 2009 at 10:15pm
Wow - that is fast. I will never be able to go bald - because I am also allergic to the sun - so I wear hats every day of the year. I have two conditions that push me toward hats: - the sun allergy and the alopecia. People tell me I look good in hats -so that is a blessing. The funny thing is I am even "in between" on hats: if I wear a wig I would need a bigger hat size, and if I put a little pony tail in the top of the back to cover the baldness on the crown of the head, my hats won't fit right. I am due for a new sun hat (I buy new ones from Solumbra every year since I wear them so much) - and I am not sure which size to buy. I think a rolled brim hat will be good if I continue to lose hair - and it might not be so distracting indoors. With a full head of hair I would take my hat off when I get indoors, but I might want to leave it on if it would cover my head. I have two nice wigs, but they are hot in the summer. I am defintely in an "in between" place.

Do you wear sunblock on your head?
Permalink Reply by Mary on April 5, 2009 at 12:27am
I am an absolute sun-phobe...always have been. You can see how pale I am in the photos on my page. I always wear a hat outdoors, even before I lost my hair. Nothing's changed about that. I go bald indoors or in the shade. I do put sunscreen on my head. I wish I could wear wigs...but I can't stand them.
Permalink Reply by Tallgirl on March 24, 2009 at 10:43pm
Camp, sleepovers, dorms, changing for a performance backstage, pool changing room, gym showers, roommates' boyfriends and guests, sharing a dressing room and trying to keep a wig on while trying on tops and dresses.....there's no rest for the young single person afraid of revelation! Wait a few decades...it gets better when you are old and divorced. Been there, done that, felt that...just life lived regularly for the rest of the road. Friend choices include people older and kinder. Plus, no one blinks an eye if you are old and eccentric!

RSS

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2024   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service