Replies to This Discussion

Permalink Reply by Jasmine on July 7, 2011 at 11:48am

Thanks! I did and I untagged the photos but I just did not expect this trust violation from my brother. I may have to change my settings for him now.

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Permalink Reply by Lisa-Lynn Marini on July 7, 2011 at 8:48am

hello Jasmine,
I'm so very sorry that your brother did this to you, I think it was very wrong for him to do such a thing!
You should have been able to do this in your own time at your own pace.
Last year I had told my sister I had alopecia and was going bald and guess what she did on facebook that very same day...............She posted pitures of herself with her overly long hair blowing in the fan and showing off , I was devistated and angry with her, to me it was like she was laughing at me.
I know it's not the same as to what your brother did to you , however I can feel your anger and I do hope eventually you will forgive him.
This is a wonderful site for support, and many friends who will stand behind you because we are all facing the sa,e thing you are going through with your alopecia.
Much luck
Lisa
xox

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Permalink Reply by Jasmine on July 7, 2011 at 11:40am

Thanks Lisa! I still love my brother but I'm not sure I want to speak with him anytime soon. I just was not ready for this yet. Its hard for people who don't have alopecia to understand what it's like. I appreciate your support!

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Permalink Reply by Rodeli on July 9, 2011 at 12:02pm

Hello Jasmine and Lisa--siblings can be sooo cruel sometimes, can't they! I have had to deal with similar situations. A few years ago my sisters and their "friends" went on the internet and lied about and trashed me and my son because they were mad that I stood up against their "friends" for illegal activity they did against me and my child and so they used the internet to lash back--much of it was really sick stuff. There were even hints that they outed me to people about my alopecia. We do not have any relationship with them anymore--that was their choice; and frankly, I don't need sisters or people like that in my life anyway. I focus on the people who truly love and care about me. My siblings are very pathetic, insecure, jealous, miserable women. I agree with the people who love me and see my sisters for who they really are that my sisters have only made themselves look bad--not me. It just shows people that they can't be trusted because if they would do that to their own family, they would do that to ANYBODY! It was hard to see the terrible things written on the internet for all the world to see, but I chose not to respond and neither did my supporters--we didn't want to fuel the fires so to speak and it eventually simmered down. For that reason I did not even tell my family I joined this website. I agree with the many. We are hear to deal with our loss--and that is what it is--it is not just hair that is lost, there is so much more to it. We are also here to make friends with people who have the same condition and get support and acceptance. We are not here to be "outed" by anyone who does not respect us or belittle us for where we are in coming to terms with our hairloss. Listen to those who give you good advice and disregard the rest. Now if you want to have a little fun getting back at your immature brother, how about getting a picture of him and photoshopping him to look bald and putting it on your facebook page and say something like "Oh, it looks like it runs in our family!" Whatever you decide to do, do what is best for you and your family. You are not under any obligation to "explain' anything to anybody if you don't want to. I tell who I want to in my time when I am ready. If I think people are just being rude and asking for the wrong reasons, I don't think they need to know the truth. Anyway, good luck to both of you. I was really angry with my sisters for quite a while and once in a while it resurfaces, but overall I told my sisters I chose to forgive them and move on for my sake and my child's because I dont' want to be bitter, angry, people like they are. I want to live loving life and all the good things and people it has to offer. I want to be happy too. I wish that for all of us.

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Permalink Reply by Jasmine on July 9, 2011 at 1:03pm

Thanks Rodeli!

I'm really sorry that happened to you. That sounds horrible. I am glad you forgave them in the end. It is hard holding onto anger. I was really mad and embarrassed at first but I am not one to hold grudges or stay mad for long. Frankly I don't have the energy for it. I'd rather spend my time and energy doing positive things for people important to me. My brother did leave me a voice message apologizing and calling himself an idiot. So I have that saved, to listen to frequently, to make myself feel better about the whole thing. I also decided that I am going to proceed the way I want despite what happened. I'll still tell who I want when I'm ready and the others let them wonder for a while. I really appreciate all your good advice and I love the suggestion for my brother -lol.

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Permalink Reply by Alliegator on July 7, 2011 at 10:14am

I got outed on Facebook too!! I'm sure it happens a lot with all different kinds of things. I posted a picture of me wearing my first wig on Facebook. A friend of a friend said "is that a wig?". UGH! I was mortified. I called my Mom for support and she said some people are just ignorant. To this day, I remind myself that there are ignorant people out there. I was also thinking who saw it. At least with me, only the people who looked at the comments on the picture saw what she wrote. I deleted the picture later that day. I know this wasn't the same as what happened to you, but I didn't want people questioning if it was a wig or not. I wasn't ready for every one of my Facebook friends to know I wear a wig now. Then later on when I was ready, I fully outed myself on my own terms. I know how you feel.

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Permalink Reply by Jasmine on July 7, 2011 at 11:44am

Thanks Alliegator! That's exactly how I feel, not ready quite yet. I just don't feel strong enough yet to deal with this with every single person I know. Many of my friends and family already know but I was not ready yet to tell the rest. I really appreciate your support!

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Permalink Reply by Karen Smith on July 7, 2011 at 10:34am

I am so sorry this happened to you. I liked something on this site once and it connected to my facebook page. I like to talk about my problems but my daughter is very private so, I am careful to follow her wishes. Most of your friends probably already knew. My daughter thought she kept her secret but when she gets close enough to tell someone they tell her they already know. It is always a relief for her.

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Permalink Reply by Jasmine on July 7, 2011 at 11:47am

Thanks Karen!

Most of my family and some of my friends know already. I have been thinking about telling others but I am not quite ready yet. Half the time I like to remain pleasantly in denial of my condition. I'm not ready for it to define who I am just yet in the eyes of so many. Thanks for understanding!

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Permalink Reply by kastababy on July 7, 2011 at 3:41pm

Okay, I have to play devil's advocate on this one.

On the one hand, I understand just as well as anyone how important it is to tell the world when you're ready to do so. Having your brother post a picture and tag you in it obviously removes that option. Does it suck? Right now I'm sure it does.

On the other hand, I also have brothers and sisters and I put myself in their shoes for a moment. If you don't mind my asking, how long have you lived with alopecia? If alopecia is something that your brother has had to live with his whole life (like my brother, who has never known me in his lifetime with hair of my own on my head - think 25 years), perhaps it was genuinely unintentional. Families post pictures of and tag each other all the time and think nothing of it. Perhaps it's a point of pride for him to show the world his beautiful sister just as she is, not hidden under something. Rather than being mad, have you asked him why he did it? Better yet, have you asked him to un-tag you? Remember, just because you got tagged on Facebook doesn't mean you can't remove it.

At this point, since the photo was posted, how man friends and jobs have you lost as a result? If you haven't lost anything, my recommendation would be to hold your head up high and keep on living. Fortunately or not, the world doesn't stop moving because you brother accidentally (or not) posted a bald picture of you. In fact, it may be a blessing in disguise that he did. Like I said, I'm playing devil's advocate here, so I apologize in advance if my opinion makes you mad. But don't take it out on your brother, unless he's the malicious sort and did it deliberately to hurt you. Blood is thicker than water, after all.

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Permalink Reply by Jasmine on July 7, 2011 at 3:53pm

Sorry Kastababy you are way off on this one. My brother is an ass. Posting a pic of me without my permission and titling it Dr. Evil is in no way good taste, nice or unintentional. It was not done in a "here's my beautiful sister way" I don't need a lecture on how the world keeps on going blah blah blah. I'm not a cry baby, alopecia is not the thing that defines me or my life. I was merely looking for support from people who understand how embarrassing this situation is.

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Permalink Reply by kastababy on July 7, 2011 at 4:23pm

As I mentioned earlier, I'm not sure how long you've lived with alopecia, and if you don't want to share that bit of information I understand. What I CAN say is after living with alopecia for 29 years one thing I have definitely gotten out of it is a VERY thick skin. The truth of the matter is that nobody can be as cruel and mean as a child, and if you grew up with that kind of teasing and lived through it, I promise you can get through ANYTHING. The other thing I've learned is if I make it a big deal, then everyone else will too. People and animals can smell fear and humiliation a mile off, and if they sense it on you they will pounce like a predator on prey.

Now if it were MY brother posting a picture of me and calling it Dr. Evil, I probably would laugh it off, simply because I like the Austin Powers movies and plus, if I'm laughing at it too it would steal his thunder. Getting upset about it and making a fuss give people like that the reaction they want, which does nothing but encourage them to do it again. The best way to handle it, in this case, would be to ignore it and keep the party moving. If you don't give a reaction at all, neither is anyone else. As a matter of fact, if I were you I would post a big huge THANK YOU on the comments and take credit for the picture, like it was your idea instead. The feeling of one-uppance you get from beating your brother at his own game should take care of any embarrassment you might feel.

I'm guessing I was just brought up differently than everyone else on here with brothers and sisters, because my parents NEVER allowed my brother and sisters and me to fight as children, EVER. We got it drilled into us that we stick together and we fight the outside no matter what. Even as adults now, we don't fight, nor do we do anything to cause embarrassment to each other. If we get mad at each other, we might not speak to each other for a couple of days, but if one of us needs ANYTHING, we provide what we can, no questions asked. That's the way it's supposed to be with brothers and sisters.

I'm sorry again if I can't be as sympathetic as you would like for me to be about this. I guess while I can empathize to a point, unless you're walking up on me and pulling off whatever is on my head in front of a crowd of people, I just don't see what is so embarrassing about the picture, especially if most of your friends know you have alopecia anyway. (BTW, if someone DID walk up on me and pull my wig or scarf off my head - which they did when I was in school - I wouldn't have time to be embarrassed, because I would be kicking the S*** t out of somebody!)

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