I just flew out to see my favorite sister - the one closest in age to me, and I am SOOOO sad and disappointed.  She treated me like I was dirty, or diseased and contagious.  I explained all about alopecia before I went, but she still wouldn't hug me, wouldn't borrow my sweater, wouldn't even touch me!  Anyone else experience this reaction?  And what did you do about it?

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There is nothing you can do about it. I am assuming you are a girl. They have decent wigs for girls. I experience this reaction as a guy all the time. I know the difference of how people treated me when I had hair and it was a huge difference. I have accepted it but people around me haven't. Many people say you should not care but I believe that not caring at all is the problem with our society... Why should we have to settle for less then normal all because of something we can not change?

It's out if your control. I am sorry that happened to you especially by someone so close to you. The best you can do is tell her how she made you feel and educate her about it. It will get easier.

Hair/hair loss is such a scary thing for many people, and sisterhood also is a very complicated thing. It's a shame your sister is so bent out of shape by your alopecia and so unsympathetic. She probably is afraid it will happen to her too. I hope you let her know you would be there for her through difficult times and you expect her to get beyond her own reaction and be there for you in loving and meaningful ways.

So sorry for how your sibling treated you, and I know how it deeply affected you.
But your sister is selfish and not in understanding of your condition.
I have 2 sisters and a brother that are even worse so I know how you feel.
God bless you and pray for your sister

I'm praying!  Thanks so much!!

yes I have alopecia as well, people don't understand it i have hair but its rapidly thinning and falling out i lost 90 percent of its density. Its hard let me tell you my hair sometimes grows back sometimes it doesnt, i just wear wigs with beanies i live in wisconsin and can cover it up well. People think its all in your head my doc says i am OCD obsessive compulsive disorder, who would not think about their hair all day long as its falling out. 

I get embarrassed but what am i going to do about it. I just wear wigs like i said before. Its silly for her to treat you like that, she's obviously kind of dumb if she thinks you can spread it no offensive, sometimes even if its your sister maybe you should write her off you don't need that negitivity as you go through this, its going to make you stronger and hey you can pick out what kind of style you want to wear each day with a different wig if you really wish and there are some awesome wigs out there and now days everyone is wearing fake hair half the celebs are. look at niki minage (however you spell it) she is proud of wearing wigs half the time its never the same color.

Just write people off who pull you down life is too short and tell her be honest and tell her how uneducated she is. I mean if she doesnt want to be around you because your hair is falling you and she's all into looks like that do you really want to be around someone who only cares about looks and treats you as if you have a horrible contagious disease? 

And remeber how it feels so if you do encounter someone with AIDS or something that you do not treat them this way even though their disease is contagious. 

YOUR BETTER THEN HER ...TELL HER HOW YOU FEEL and if she does not respond the way you want write her off

So sorry your sister gave you that reaction, but it is her issue not yours.  I have had AU for over 42 years now and I can count on one hand the times family has had even a discussion about my AU as if talking about it might cause them a problem.  You have to feel good about you, so you will have to put her insecure feelings out of your head and the reality is that is what it is all about, your sister was insecure.  She may never change or maybe someday she will, but you have to get to feeling good about you so do not let this set you back.  Hold your head up high, and take the high road.

Forget these replies about "Pray for her", "educate her" no.  To hell with her. Period.  Your sister is supposed to be a person who accepts you unconditionally for who you are.  Heck, you both grew up together for crying out loud.  Then she acts like you're not part of her flesh and blood?

No.  I grew up my whole life trying to get people to "accept" with or without alopecia.  You know what? the harder you try to educate, or "feel their pain", the more they resisted me.

I've learned in life, that when i have a "f**ck you! i love myself, regardless" attitude, people swarm to be your friend.  And i usually hear the "I wish i were more like you" crap. This includes siblings.

I always heard this saying: "You can choose your friends - but you can't choose family" - well, sure you can "choose your family" I've done it - and that aforementioned phrase is a bunk.  Anyone who loves you for who you are - in my opinion - is family.  We're all coming from the same damn DNA anyway, so what's the difference?

Loving what you said.  Agree, too!

Hey, it hurts when people close to us give in to their own fears and reactions. You've done your best with giving her the facts. Now you can't control her actions, but you can control your reaction. The key is to come across as confident in who you are and your great qualities - no matter what's happening on the top of your head. "Thanks, but I feel beautiful just the way I am" -- and you are. Then move on and talk about different stuff in your lives. 

Great insight.  Thank you for reminding me of things I thought I knew!  I will keep in mind  that I will control my reactions and I will remember to be confident.  I needed to hear these words of wisdom.  Thank you!

This is a hard disease to explain to the people closest to you and friends, extended family.  The ones who understood were the ones who took the time to read up on it or had a friend who has it.  I have found that most don’t understand, so many think without seeing it in person, that i have female pattern baldness.   Just the other day a stranger who has another type of autoimmune disease said to me when we were chatting, oh, i too have thinning hair,  my husband has thinning hair etc...My daughters reaction was "am i going to have this too"? Fear.  It hurts that some family, friends were not supportive, so I just chose to ignore their ignorance after asking them repeatedly to read up on it.  Find the ones who support you and let the ones who don’t go til they choose to understand.  It does make you stronger.  It also helps you find the few people that are worth your time.    



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