Alopecia World
www.alopeciaworld.com
Public ignorance is the worst symptom & there are no upsides
My hair started falling out in the 4th grade. By 7th grade it was mostly gone. My parents bought me my first wig when I was 15. I wore one (hid under one) for 35 years until I finally took it of about 10 yrs ago. I have had alopecia universalis now for over 45 yrs. I just turned 58. For me the only upside is knowing long ago that none of my hair will ever come back. There r no other upsides. To this day I am still single. I have never had a girl friend or relationship in my whole life. I lost my virginity at age 48. That's it. The worse symptom is public ignorance.
Replies to This Discussion
-
Permalink Reply by Rose Marie' on
-
Hello Mark
My daughter has had alopecia since she was 12 years old and her experience has been somewhat different to your own. It is distressing to read your post, even though I fully understand it is your reality. For reasons you have not explained it seems like your life may have been limited by your alopecia and I'm truly sad that has been the result you have been dealing with, but it is not everyones truth around this condition.
My daughter is quite open about her alopecia (but does not advertise the fact). She is a school teacher in a school with over 2000 boys....everyone at the school knows she has alopecia and it has made not a jot of difference to how she teaches. She has had a very normal teenage life with boyfriends etc and now is in a very stable, happy relationship with her partner. Public ignorance is something she works hard to manage, but I do agree many just don't know what alopecia is and what it means to those who are dealing with it.
If I can be of any support to you feel free to message me.
Rosy
-
-
The past, exaggerates some things and scars over others. Even though I know that I had some good times when I was in junior high school, all I remember is the bad, the incidents of what was left of my hair being ripped out of my head by bullies on a few occasions, the jokes, laughing, etc, It is a blessing that there are no telethons to raise money for our condition. Childhood cancer MD etc are much worse in every sense, by far. But it is also a curse because the only way we can educate pep is to be able to tell pep about our condition. And we cant stop everyone on the street or bus and say, "I have this condition and not cancer." But there r 2 kinds of ignorance, one is simply not knowing or understanding, and the other is the kind of ignorance that can range from where someone associates derogatory terms about you, to your face or behind your back, all the way to simply experiencing people in your adult life who are anti-social and standoffish because they do not know why you look like you do. When I was about 46 (12 yrs ago) and I was walking down the street one summer in shorts and a tank top, three young boys yelled out the window of their car "hey fagat" because I had have no body hair any where. I didn't think this was supposed to happen anymore at my age. I guess the moral is that just because we grow up does not man rest of the world does. I heard another rude comment by some college kids later that same day. For a short while I felt like I wanted to kill them. If I had to do things over I probably would have done things different, like many other things that I regret in my life. I would not have hid under that wig for all those years and maybe found some way to be more open to others. I have been seeing a shrink now for about 5 yrs, and I have often said that I feel guilty blaming things that happened so many years ago, on my current attitude today. But I guess that if I would have or ever do find someone, lets say a woman, who accepts me as I am, this will be with me for good. We are all products of our past and present experiences. But that can be a two edged sword. The past does not always guarantee what will happen tomorrow or the next day. But that is what I have been chained to and unfortunately that is what often sets my outlook for the future. I'm trying to fight that and move on. But who knows if, when, or what the future will hold. Thanks again. Mark Hansen
-
Permalink Reply by Cindie on
-
Wow, Mark. I wish you lived nearby. I'd be your friend, and introduce to some good, decent people who understand your condition.
-
-
I'm pretty much on the same path as you. I try to improve my looks and appearence but it makes no difference because I still look like a cancer patient. I'm only 18 but I can imagine being a 50 year old virgin because of this. This disease gives you severe anxiety.
Women are taught not to except men who are undesirable. Women are encouraged to reject men for being short, bald, fat etc.... Men who do that to women are shamed. There are a lot of bald men on this site who lost their hair young and never had intimate relations with women because of it. It's acceptable for women to cry and be emotional. It's acceptable for women to wear wigs and hide this disease. Not acceptable for us men. We are just suppose suck it up and deal with it even if it means most women will reject us and laugh at us.
-
-
Hi. As I said, a big part of the reason for my virginity is that I hid under a wig for 35 yrs and did not take nearly enough chances in approaching women. So I may have missed a lot of chances. But yes, this condition does give one a lot of anxiety. This anxiety, much of it antisipitory anxiety, has ruled or ruined much of my life. That is basically a fear of doing things, taking chances, or making decisions about everything from whether to ask a woman out or not to whether or not to attend college, to even whether I should apply for a simple sales job. I end up antipitating all the bad things that may happen if I make a decision, if I go ahead and do these things. At job interviews that I have had over the last few years, I think I almost worry more about getting the job, will I like it, how will the people be that I work with, will I end up hating my boss, before I even get the job. And I think that reflects in my personality and answers to questions during the interview process. As a result I have two college degrees a BA and MA, that have proved to be useless. I have been unemployed for years, I am broke and my sister has been helping me out financially for the last few months. and I owe a fortune in unpaid stud loans. Well I have t get back to my job search. I have 2 hours a day here at the east side library. I have about 1/45 min's left. If I don't get back here today Ill be back tomorrow afternoon. Later, Thanks much sweetheart. Mark Hansen
Then I end up making the wrong decisions or making hasty decisions too late or on impulse. Sometimes I feel that because I had so many problems when I was I junior high school having may hair ripped out being bullied that my anxiety is kind of a form of PTSD.
© 2024 Created by Alopecia World.
Powered by
