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This is wearing me down
Hi, I have had AT since the summer before my senior year of high school. Great timing! I was so embarrassed, and wore a wig to school and never told anyone. I made my mother tell the moms of a couple of my close friends and thats it. I always felt that people were staring at me. I went off to college and dealt with it, but only told my roommates and then it was never spoken of. It has been 20 years and I am just so tired of "dealing with it". I thought I accepted it but don't know if deep down I have. It has totally changed me as a person, has affected my self esteem, given me anger issues, etc. I still feel like people are staring at me daily. I haven't kept any lasting female friendships because I just feel fake, embarassed and that they are judging me. I am married and my husband knows and he is fine with it. He jokes about it, but has never seen me uncovered and never will! I just feel lonely and that nobody truly understands the pain I have been in. Like I said, 20 years of this has just sukced the life out of me.
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Comment by Jocelyn on June 5, 2010 at 7:19am
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Hey Leslee
Thank you for being so honest. The process of accepting something you don't want to is never easy and for lack of a better word Sh***!And you are right, no one without alopecia understands fully or can fully put themselves in our shoes but you are so lucky to have a husband that is willing to give it a shot with humor!
I found that by talking about my wigs and stuff like I used to talk about my haircuts with friends has made our relationships stronger and taken some of the pressure off of me. I don't just come out and tell everyone like, "Good Morning! I have patchy bald spots hidden under my wig!" but those people that I really care about I do and they listen believe it or not! But I do have friends or aquaintances I havent told because it hasn't come up and I debate if I should just say something and I think that's OK. It's not being fake, it's being protective of yourself.
Do you visit any support groups in NJ? We have a NAAF ground in the city the second Monday night of each month, we have one this Monday the 7th. I found that to be extremely helpful for me. Here are women and men who do know what you are talking about and how you feel. I'll be there if you want a buddy.
Keep your head up! You are a beautiful children with beautiful kids and a loving husband. Friends come and go but these are the people who matter most and can help give you that life back that you think is gone for the moment.
Keep in touch!
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Comment by Leslee on June 5, 2010 at 7:58am
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Thank you Jocelyn! I would have loved to come to your support group but I live over 1 hour and 15 mins at least and I don't drive in the city ( i know, Im a baby LOL) I wish I could find one in NJ, I think that would help. I've never actually met anyone like "me" before.
I know I have my husband and son, but my extended family is not close, and I really miss those female bonds....I know, I'm such a loser!!!!
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You are not a loser! We all have our bad days and the days we forget about it until our wig slips or something crazy :) I would check out the NAAF site for a group near you in NJ. I'm also hosting an event with Bald Girls Do Lunch - part of my growing with acceptance plan. Its going to be July 17, 2010 at Tal Bagel's in NYC (Bagel Brunch) Very laid back - come and stay as long as you want. Eat a bagel and drink coffee. Talk hair, talk kids whatever. You can bring friends also that don't have alopecia to hang out and enjoy. Nothing like a reason to get into the city .. maybe do some shopping or visit central park after :)
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Comment by Tallgirl on June 5, 2010 at 7:42pm
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I e-mail at least one old friend a day who loves me just as I am. It takes the pressure off after a hard day, and removes the worry of someone glancing up at my head. Church friends are also very accepting (liberal faith=no judgments). I'll be checking out a new alopecia support group myself soon, but in the past I have been to groups and have found the time spent with others who share this to be even more accepting than being with family members who don't have hair loss! The NAAF conference I went to years ago was wonderful...imagine a hotel reserving a whole pool for only alopecians? Or being in a whole conference room, cocktail hour, or in discussion workshops with all alopecians? Good luck!
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You can also ask the NJ support group to have a few of the females meet you halfway between your cities, at a nice restaurant or wig shop, for a fun afternoon.
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Comment by Roslyn on June 6, 2010 at 11:29am
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You are definitely not alone in the way you feel. But you have friends now that you can talk to and we truly understand and will NEVER judge you. For a long time my husband was the only one who saw me with no hair. It took me even longer to let my daughter see me. And when I told her I wore a scarve to work last week she was a less enthusiatic than me. Be strong and don't let it get you down.
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Comment by Petra on June 6, 2010 at 2:46pm
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Hi Lesliee, You have come to the right place for support. Hopefully you will find what you are looking for here and in time maybe show your real self at least to your family and friends. Looking forward to talking to you.
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Comment by Lisa-Lynn Marini on June 6, 2010 at 4:30pm
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Hi Leslie,
I have to agree ith Susan that 20 years is indeed such a long time to hide. I may not have had Alopecia for 20 years (mine just started about month ago) I feel your pain, the mixed feelings.This is why I came on this site, many beautiful people who understand how we feel and we will get through this , sure it will take time but I keep hopeful I WILL.
Chin up sweety we are ALL here for each other!!!
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Comment by Carmen Dayhoff on June 6, 2010 at 5:23pm
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Hey Leslie. BIGG BIGG HUGS to you.
Well girl I would totally agree that 20 years is a really long time to hide. You are a beautiful person. I do understand where you are coming from bc I have always been pretty secretive about my AU. I've had it for 29 years now. I have talked about it pretty openly for many years, but still hated it about myself. I only told who I had to. Some of the attitudes of my best friends helped me though.
Leslie, what do you think will happen if you open up about your hair loss? People are not going to run screeming. They are not going to tell you that you are ugly, because you are not. We did not ask for this or cause this in any way. When we carry guilt, anger, resentment, etc..., it becomes like the largest weight of the world. It affects our personality. It affects our relationships. Leslie, there is a human need in us to "know and be know." When we do not fulfill this need in us, we feel empty and it keeps us from being close to others in our life.
One thing that I learned recently, and God help me, I have struggled with it: the deffinition of insanity is to do things the same way but expect a different result. Do it with grace and baby steps, but If you see that something is not right, try something new. You will most definately get different results. If you still are not getting the result that you want, try something else until it comes out right.
We are here for you. We can be a step in trying something new! Talk to us more and more. You are not alone. Just know that.
MORE BIGG BIGG HUGS to you.
Carmen
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PS there is a book advertised on here called The Big Fall Living with Hair loss. It's a really great book. It also may be a great encouragement to you.
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