Alopecia World
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I need someone who knows what I'm going through/been through
I've had alopecia universalis since 2006 and have been going through it with no one there to understand exactly what I'm going through. I have support, just no one who truly understands what it's like. It's taken a lot to get me to come on this site, but I realized I can only be strong for so long. I need someone who knows.
Replies to This Discussion
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Permalink Reply by Anne Brenda on
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I have a few questions, which will help me respond to you. What is your age? Did you have any other things going on in your family and/or life when you developed alopecia?
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Hi. Believe me I do no what you are going thorough. Hi Jen, My name is Mark Hansen and I live on the east side of Milwaukee. I am a single never married, 55 year old guy who has had Alopecia Universalis or Totalis, (total body hair loss) for about over 40 years. Mine started to fall out in the 4th grade. And by the middle of 7th grade my head was made up of nothing but little scarce patches of hair. That was at least until some of what I had left was ripped out of my head on a few occasions by bullies. I can still see their laughing faces today. Basically I was a school freak through the 9th grade. My parents bought me a wig just before I went into high school. I fared a little bit better but it was not a secret very long. Nevertheless I went on to wear a number of wigs for about the next 35 years.
I did have some good times in junior high school and high school, but I really can't remember any. I any case, the problem is/was that, whereas the wigs were supposed to increase my confidence, and allow me to approach more women, at night clubs, bars, college, etc, it really did not. It inhibited me from doing so because I knew that, even if a woman agreed to go out with me, I would still have to tell her about my wig/condition etc. and I assumed that she would be turned off. So I spent half the 70's, most all of the 80's, and 90's simply not taking chances with the assumption that I would be rejected. And I did not take nearly enough chances by asking women out. So about 8 years ago I took off the wig and threw it away. I do not know just how much good that has done either because now days a lot of people do not know what to make of me.
They think I have cancer or I just get double takes day in and day out on the bus, coffee shops, etc. And it is not so much because of just the baldness either. It is also because I have no facial hair either, no eye brows, eye lashes, nothing. Even when I wore wigs I could not cover that up. And even when I was in college and up into my 40's and late 40's I would still hear "he is so weird" behind my back, among other slanders, at various venues, because people see my hairless face but they do not know right away what is wrong with me. I may sound over sensitive but just because I grow up does not mean that the rest of the world does. Even some people I have known over the years have been anti-social because of the way I look.
Believe it or not, when I was about 43 or 44 I had some teens drive by in car one summer and yell Fagot at me because I had on shorts and a tank top, the fact that I had no body hair was plainly evident. Even today I get second looks from passing adults. But over the years it is not the ignorance in the form of natural curiosity that has gotten to me, it is type of ignorance where when one does not understand why someone looks the way they do, so they associate derogatory terms for the person.
However, in my case, as far as my social life is concerned the eternal optimist will say that if I ask out a thousand women and they all turn me down, ask one more. So despite your past experiences, do not always assume that the experiences and people just head of you will be as bad. I have often said that we are a product of our past experiences. And I still feel that many of my inhibitions, attitudes, and perceptions, are a product of my past. Sometimes I feel that I am using these past events as a crutch for my current short falls, at work, social life, etc. But that can be a two edged sword because the past does not always guarantee what the future will bring.
The problem with me is that I had/have not followed that wisdom nearly enough. And today I not only am single and never married but I have never had a girl friend or a relationship in my life. I don’t know exactly what advice to give you Jen. Because I often think in hind site (where I seem to live much of my life) that maybe if I would have tried to tell the bullies and others back then about my condition, they would have listened or been less mean. But it seems that all I was trying to do at that time was survive. This is really over stating things a lot because life is not as easy as remembering a phrase or quote.
But there is a saying that, "Those who matter (your real friends, loved ones, etc,) "don't mind, and those who do mind (those who care how you look) do not (or should not) matter." All I can say is to live your life as best you can. Shave your head completely. Wear a quality wig if you wish. But keep your real friends close and your life goals closer. Do not always do like I did; do not always make assumptions about people too quickly, that they may not to like you just because you have this condition. I know that is so much, much easier said than done. The world people like us live in (with this condition) can be and will often be a cruel place, Kids teens and even adults, Talk to them. Try to explain things to them if you can. And thank God that our condition is not physically serious enough (terminal) that they have to hold telethons to raise money and awareness. But then again, it is but one of many conditions out there that is, psychologically debilitating, depressing, stressful, etc, at least, and therefore, few people are aware of what it is. And try to stay away from those who you feel do not matter. Good luck sweetheart. Mark Hansen
p.s. If you want to write back please do so anytime.
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Permalink Reply by paula on
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i feel your pain mark. but what doesn't kill us makes us stronger, right? we can only hope.
thank you for reaching out to help jen. i bet she feels better already! paula
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Permalink Reply by Jackie on
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Hi Mark. Like you, I also began losing my hair while in grade 4 and was a patchy wreck by grade 7. The bullies were egregious and unforgiving back then. But in spite of all that, i fared a bit better than u in that I've had many boyfriends, am now married for 8 years and have two lovely children. But the road was certainly a tough one. I suffered terrible physical abuse by an ex that lasted 6 years and It took 10 years to finally get my colllege degree. Which ive done nothing with because my self esteem is so low that i dont know how to market myself. I still suffer tremendous low self esteem and I am a slave to my wig.....I dunno...now that I put it in writing, I suppose things could be worse. Lol.
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Permalink Reply by Nicole on
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Yes, please know you are definitely not alone! I know it can really feel that way at times. I've had universalis since Jan 2010. It takes some getting used to but you can be happy! I'm here if you ever need to talk hun.
XoXo,
Nic
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Permalink Reply by lauren on
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Hey jen i have had alopecia areata my entire life I know what your going through . If you need anything message me and I will do what i can to help.
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Welcome Jenn .... This site will show you that you never have to feel alone. Anyone and everyone is a friend here. The support is amazing. You will always feel understood and respect returned. Hope that makes sense, it's very early in the morning for me lol.
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Permalink Reply by Taylor H on
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Hello, my name is Taylor, and I get it.... I've had alopecia since I was 5 and it was tough to grow up this way but I've found my strength and if I can help you with that process please let me know. I'm here and everyone on this site is as well I'm sure. :-) Don't hesitate to message me. If you send me a private message I will talk to you and if you need someone to call that is fine too.
Best wishes and love from an alopecia sister :-)
Taylor-
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Permalink Reply by sue inger on
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hia jen , i know believe me i lost every hair on my head and body , my eyelashes eyebrows everything , my hair was very important to me , and wen it started coming out in handfuls and i realise what wos happening , i was mortified , and when i went bald , it was devastating for me , people used to say well at least its not cancer and your not dying .... but for me i might as well of been dead , i went through very bad depression and just let myself go , i had to wear wigs which although they looked fab i longed for my own hair , 2 yrs i was bald , my hair has now grown back but it now developing big bald patches again , i am having steroid injections at the moment but groth is very slow if any , i am concous all the time of my hair , and it has chaanged my life considerably , i have put on 3st and dont consider myself attractive anymore , i wouldnt wish it on any woman and people no matter how they try can never ever understand , the mental torture i go through every day ..... please feel free to talk to me any time xxxx sue xx
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Jen, just know that everyone on this site has basically gone thru or is still going thru the same emotions you are right now. I have had Alopecia for over 15yrs now. I would give anything to have my hair back. But for now I just try to live with it the best way I know how. It will get better for you. :)
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Permalink Reply by Wendy Coco on
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Hi Jen, I have had Alopecia Universalis since I was 3 years old; I am now 56. It hasn't been easy throughout my life but being "different" helped me embrace life as a strong passionate human being. As a child, I was bullied, teased, rejected but through it all I found humor; I would laugh at myself and I have so many funny stories {that weren't funny at the time],I had to find coping skills to march forward and accept that this was Gods plan.
I encourage you to seek out every possible resource ( treatments,laser,the best wigs available, permanent makeup etc. I have names and places for that help if you are interested.
Wendy:)
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