Replies to This Discussion

Permalink Reply by VanillaPlum01 on June 28, 2015 at 4:22am

Thank you :)

I never felt like I was insecure about my alopecia as onthers have suggested but rather I wanted to "feel" pretty. Like dressing up like a princess lol. I remember a time when she told me she was sad because she couldnt play with my hair like other girl could do with their mommies. I got my wig, brushes and hairspray so fast lol the result was epic.

I wonder how my son will react when he grows up. Did they have the same amount of exposure/ knowledge about it? Just curious

• ▶ Reply

Permalink Reply by Mark S. Hansen on July 1, 2015 at 5:16pm

My name is Mark Hansen. I am 59 and I have had Aleopecia Universalis, total body hair loss for over 45 yrears. My hair really started to fall out in chunks when I was 13. My 7th to 9th grade years where pure hell. My parents bought me my first wig when I was 15 and I hid under one for 35+ years until I finally took it off 10 years or so ago. I think the worst symptom of this condition is ignorance, not just in the fact that many people don't understand why we look like we do, but those who mock us, to our faces, behind our backs etc. And as I have often said, just bec we grow up that does not in any way mean that the rest of the world necessarily does. When I was 45, a bunch of college kids road by me one summer when all I had on was a tank top and shorts, and bec I had no body hair they yelled fagat out the window. And even today I still get second glances by pep on the bus at bars etc. I am not completely paranoid, where I necessarily think the whole world is only looking at me and as I said, pep just have normal human curiosity. But we cant walk by everyone every day and say Hi I look like this bec I have that, not cancer etc. So we live on. I hope you can get it through to your daughter that what she is doing is very very wrong. I am assuming that if she is actually doing that to her own mother then she must or may soon be mocking other kids who have some prob she does not understand. But I also see that you have a family, which I assume means that you have found someone who loves you and accepts you as you are. I have never had that. I have been single all my life. I have never had a girlfriend or relationship, ever. I lost my virginity at age 48. And before that that last time I went out with a woman was 1989. And that's about it for me. Good luck with your daughter. Mark S Hansen in MIlw WI.  

• ▶ Reply

Permalink Reply by Debbi Fuller on July 1, 2015 at 6:33pm

OK, I've said this before, but it bears repeating.  I have been in the "business" for 25 years.  In that time, I have followed clients from grade school to adulthood.  Almost ALL of my clients have married SUPER people.  They mostly have kids and they are statistically WAY more likely to NOT get divorced than the average.  I think that this is because from the very beginning, their partners were the kind of people who accept imperfection.  ALL of us are imperfect, whether we have hair or not.  When the partner of a non-alopecian realizes that their partner isn't perfect, they split. The partner of an alopecian has already "been there and done that".  They won't leave you because you gain a few pounds or because you aren't "perfect".  They already love you the way you are because YOU ARE LOVABLE.  You are lovable because you believe you are.  You are a nice, positive, caring, open, trustworthy, kind and sensitive person.  That's why my clients are still married, happy and  thriving.  Alopecia does NOT make you an "untouchable".  Only your attitude can do that.  For the minority who have divorced - nothing is a 'sure thing'.  Anyone can make a bad choice and sometimes that bad choice comes from insecurity.  Love who you are, demand love and respect from your partners and friends and that is usually what you will get.

• ▶ Reply

Permalink Reply by GardenJess on July 2, 2015 at 6:35am

I have a 9 year old son who is not as sensitive about other people as it sounds like your daughter usually is. I'm pretty sure he is after attention when he shows off about my alopecia. In his case it has involved tugging at my wig around people or talking about the wig. Once he was mad at me in a doctor's office and even pulled my wig off my head. I figured he was trying to do something shocking, so I didn't react except to clarify to the pediatrician that I have alopecia. When I first started wearing a wig, my younger son, then 5, announced it to kids and adults, and it was more as if he thought it was cool to know something interesting than anything else. He grew out of that quickly. With my 9 year old, I feel it is important both to let him know that when I am wearing a wig, it is my hair and not to mess with it, and to convey that this isn't a horrific, shameful thing. I make it clear that I am OK with people knowing, but try to explain to him that it isn't something to mess with or comment on in public. I worry that my kids will become embarrassed by me at some point (I often wear head coverings that don't hide my hair loss or go uncovered at home), but in the end, I think any embarrassment is their problem. That doesn't mean I'm insensitive to their feelings, just that if they have to deal with their friends over this, it might help them gain perspective on what really matters. Their school addresses character and treating themselves and other people respectfully in a way that mine never did as a kid.

• ▶ Reply

Permalink Reply by Zimrie on July 6, 2015 at 1:31pm

When my own was young, I was lucky to have unconditional acceptance from her as far as my hair loss.  The worst thing she ever said to me was "Don't ever take your hair off"    

We also talked about her classmates at school and I told her to tell them, "My mother doesn't care what you think of her."  

She also told me that they gave up tormenting her on account of me because she didn't let them get her upset.   

One time I was approached by a child around six or seven on the playground who seemed flipped out by me because I wore a head scarf and was asking me personal questions.   I asked her who was taking care of her and found out she was in foster care.    

I think if kids don't put themselves in your shoes then maybe that's just how they are and they need extensive help with this.   

• ▶ Reply

Permalink Reply by Mashloum on July 27, 2015 at 3:01pm

Sometimes ignorance is better for those asking for attention by raising such discussion, and being assertive in response closing this discussion will be recommended since changing people is a challenge!

Recommended book, Pulling Your Own Strings: Dynamic Techniques for Dealing with Other People and Living Your Life as You Choose Author: Wayne Dyer HarperCollins, 1991 ISBN 066109224 Dr. Wayne Dyer has a compassionate and understanding way of helping people. He shares how we can prevent ourselves from being victimized by others and begin to operate from a position of personal power. He teaches you how to free yourself from your own limiting beliefs and start recognizing your own personal power

• ▶ Reply

• ‹ Previous
• 1
• 2
• 3
• Next ›
• Page