Alopecia World
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Can we really accept alopecia?
I know that this is a rather tarnished subject in the community however, experiencing it myself in the last couple of months and, consequently, the return of the negative effects this thing had on me, i feel like putting them down hoping that it will make me pass over it.
Ever since general school I felt discriminated against and marginalized. Kids were laughing at me, used to call me names and it was not so uncommon that I picked up fights with colleagues. Later on in high-school it was pretty much the same and probably only in faculty things might have improved but I was still teased.
Having alopecia it made it even worse. It was like I could never become "normal" anymore and that I failed my promise to the society forever. I never been a very sociable person given the discrimination but this despite my nature which, I believe, it is quite the opposite, expansive and generous. But now it was like there was no other choice - alopecia changed forever the inside reflection I had about myself.
Through ups and downs, I could say that until last year things were acceptable and life was going ok, I thought that i finally manged living with it. However, when I realized that a lot of the surrounding people pays a lot of attention to the physical appearance it made me reflect again on this issue. Of course nothing is new, since the society I am living in (a so called "western" society) is constantly fueling the same old misconceptions: blond people are more beautiful than non-blond people, caucasians more beautiful than non-caucasians and of course with hair is more beautiful than without-hair. You see it at TV, in the commercials and ads, on the street, at school.
So, under this constant pressure from the "beautiful people" I started to succumb. I find it much harder to laugh or to be nice with the people around me. I feel that now the only solution I have is to become a hermit, isolated in my own shell, not meeting people than if necessary and always keep things official and short. The overall impression i have about myself is actually low and so the level of self trust.
A friend of mine who also has alopecia, told me that I am looking for comforting myself in self-victimization. It might be possible, but I tell you what, I am sure doing a bad job out of it 'cause frankly speaking i can not find this comfort very "comforting".
So after all this years of having alopecia I still feel like I have a lot to learn to deal with it. Right now I feel a huge wave of tiredness and powerlessness in the same time. I find it hard to keep in touch with my family, my friends and the people I know. With only few exceptions, the internet truly became for me the one way to meet and stay in touch with people.
I wonder what does one needs in order to really accept it? Bowing my head to the soleness of life or continue fight and unrest to find one's place?
Ever since general school I felt discriminated against and marginalized. Kids were laughing at me, used to call me names and it was not so uncommon that I picked up fights with colleagues. Later on in high-school it was pretty much the same and probably only in faculty things might have improved but I was still teased.
Having alopecia it made it even worse. It was like I could never become "normal" anymore and that I failed my promise to the society forever. I never been a very sociable person given the discrimination but this despite my nature which, I believe, it is quite the opposite, expansive and generous. But now it was like there was no other choice - alopecia changed forever the inside reflection I had about myself.
Through ups and downs, I could say that until last year things were acceptable and life was going ok, I thought that i finally manged living with it. However, when I realized that a lot of the surrounding people pays a lot of attention to the physical appearance it made me reflect again on this issue. Of course nothing is new, since the society I am living in (a so called "western" society) is constantly fueling the same old misconceptions: blond people are more beautiful than non-blond people, caucasians more beautiful than non-caucasians and of course with hair is more beautiful than without-hair. You see it at TV, in the commercials and ads, on the street, at school.
So, under this constant pressure from the "beautiful people" I started to succumb. I find it much harder to laugh or to be nice with the people around me. I feel that now the only solution I have is to become a hermit, isolated in my own shell, not meeting people than if necessary and always keep things official and short. The overall impression i have about myself is actually low and so the level of self trust.
A friend of mine who also has alopecia, told me that I am looking for comforting myself in self-victimization. It might be possible, but I tell you what, I am sure doing a bad job out of it 'cause frankly speaking i can not find this comfort very "comforting".
So after all this years of having alopecia I still feel like I have a lot to learn to deal with it. Right now I feel a huge wave of tiredness and powerlessness in the same time. I find it hard to keep in touch with my family, my friends and the people I know. With only few exceptions, the internet truly became for me the one way to meet and stay in touch with people.
I wonder what does one needs in order to really accept it? Bowing my head to the soleness of life or continue fight and unrest to find one's place?
Replies to This Discussion
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Permalink Reply by Pat Latina on
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Susan, well said.
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Cristian, I've just come to terms with the fact that this is the way my life will be. I've had AA and now AU for a total of 10yrs and it was finding this site and finding all these wonderful people that have helped me through. Everyday is a new day - I just live the day - I try to not think about the past and what ppl might have said or done, cause it takes away from living for me. Look to the future and define myself as who I am inside. Somedays are easier than others but still I rather live with alopecia than have anything else. We're healthy just bald - we can do anything and everything someone with hair can do and perhaps sometimes better. Love yourself - you're the only one that has to live with yourself for the rest of your life every thing/one else is secondary to YOU - MOST IMPORTANT. ((((HUGS)))
Pat
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Permalink Reply by Jenna4 on
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Hi Cristian..you are right - you are powerless over alopecia. Just like the Serenity Prayer states, at some point you have to accept the things you cannot change. I wish there was a 12-step program for alopecia, I used to attend Al-Anon years ago and many of the steps could be applied to any condition. Step 1 - Admitted we were powerless over _____Alopecia____and our lives have become unmanageable. I don't know how to help you get to that spot where you come out of hiding and mix with society again, maybe it's just taking baby steps. Reach out to others on this site, read through our stories and respond when you feel you have something to add. I believe you begin to heal when you reach out and accept the help that is being offered and when you help others on their journey. Perhaps the fact that you have been dealing with this since you were a child has hardened you to the condition. I don't know how I would have handled it as a child.
Maybe you can try to look at the positives of your situation: you don't have to get haircuts, shave to get your look, as a man, I have to say that you have it easier than we women do with public acceptance of baldness. Many women LOVE bald men and find it sexy...my husband is bald by choice and I love it, as do many of my friends. He started with male patterned baldness at a young age (25) and decided to shave his head then before it was even popular. It is a shame to hide out and not participate in society just because you are bald. You are a good looking man and said you are personable...who cares about mainstream society anyway? We can't live our lives conforming to what everyone else wants or likes. We have to accept who we are with all our quirks and live our lives the best way we can.
Okay, I'll get off my soapbox now....good luck to you and know you are not alone.
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Permalink Reply by Evan on
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Cristian - based on what you wrote, I suspect due to the current worldview you're holding (and I'm not faulting you for it in any way) it appears you may be suffering from Depression. I would suggest speaking with a psychiatrist (not your general health doctor - 90% of the time they don't know what they are doing when it comes to psychotropic medications). Regardless if they feel you need medication, I'd also speak with a psychologist or counselor regarding your issues.
If you lived locally, I'd be happy yo get you 'out and about' meeting other people that wouldn't give a rats arse about the alopecia. Regarding your appearance - based on your picture, and coming from a heterosexual male - I'd say you have nothing to worry about; I work with guys who wish they looked like you.
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Permalink Reply by Galena on
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Cristian, today I had one of those moments that are very rare. I distant memory popped into my mind that I now believe was especially meant to share with you. This is so cool. While at work today, I remembered the first alopecian I knew, a high-school classmate named Jeffery. Jeff had AU and wore a wig to school. He had exactly all of the experiences that you described in your post... including the moodiness that kept us from really bonding. We were more than associates, but less than best friends and shared a couple of classes together.
One quarter we had P.E.(Physical Education) together which was basically Track and Field. Jeffery was a good sprint runner and would always trade his wig for a ball cap when he ran during P.E. The coach encouraged me, Jeff and some others to "try-out" (everyone he asked made the team) for Track and Field. We practiced weeks for the meets and at the first one, Jeffery wasn't permitted to wear his ball cap. The coach was enraged and threatened to do this and that until Jeff told him it was okay, he's okay running without the cap.
I remembered the moment that we were called to warm-up and Jeff was bald. He had a beautiful runner's physique and I vividly recall admiring his entire hairless body and nice shaped head. He caught me staring and later asked me why I stared at him. I apologized, but was too embarrassed to say I was checking him out. I think he knew, but he didn't push or pursue it.
I also later heard other girls comment that he was attractive. I said all this to say that you underestimate who you are and how you affect others. Everyone is not making fun of you despite what you feel. Jeff kept people at a distance because he was afraid to be disappointed or humiliated. Jeff won a couple of trophies that year and a couple of girl admirers. For him, ditching that cap and letting others see how he really looked changed his confidence level. So Cristian don't be afraid to be yourself even when you feel disgusted, we all feel down from time to time. But don't stay down for long. Self-acceptance is a process. Keep coming here for encouragement and support--this really is a healing place. Take care.
Hugs,
~Galena
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Permalink Reply by Tallgirl on
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Attraction is so personal...you never really know what makes others sit up and take notice, do you>
Sense of sight is only one sense...and there is more to look at than just one's head! What of scents, tastes, touches, sounds, temperatures, humor, intellect, sensitivity/gentleness, or movements? Hate to be blunt, but in the grown-up world, there it is: the things we remember most, the things that we can live with, the things that count, the things we love...
Get out there and make some real memories!
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Permalink Reply by Dielle on
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I totally understand where you are coming from because I lost all of my hair when I was just entering middle school (12 years old now 19) and I believe that getting alopecia as a kid really does make it harder than when you are an adult because you don't know who you are as a person yet and it starts to define you. Like you I had a horrible experience through school. There was a group of kids that just made life hell and it was almost like they were having some sort of competition to see who could come up with the most creative nickname or act that would hurt me emotionally. I know how hard it is to put yourself out there to other people because it is such a mixed bag of how people will respond, especially people our own age. I don't know if it was the same for you but I didn't really date much through high school and its the same in college because I really just don't think of myself as being "attractive" or anything. Its tough but I think if we let this disorder rule us we end up being the only losers and all the jerks and insensitive people just end up winning. I don't think we can ever truly accept this because we didn't do anything to deserve it and we weren't the causes of it. If I had lost all of my hair because of something I did like drugs then I would know where to place the blame but you can't blame something you can't see or control. There have been a lot of really bad moments where I wished I would just die because I felt like I was living a half-life (don't worry anyone I would never kill myself), but then there have also been some really good times too. The world isn't completely full of idiots just partially lol. This summer I have been doing an internship in a small town with a vet and I've just been wearing my bandana and people have been really nice and understanding. A couple of people thought I had cancer but they only ever asked in a concerned way and they meant it nicely. I can't say that they felt totally comfortable around me all the time but they've gotten used to it. Its tough feelings like nobody is ever going to accept you for who you are just because you are bald, but you will never find out if you don't keep trying so I would say keep up the fight and ignore the people that get in your way because they aren't worth the breath it would take to reason with them. If you ever need to talk I'm here.
Dielle
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Permalink Reply by Joshua on
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hi,
I couldnt agree more with what others have mentioned earlier in their replies. Expressing it out in words on support places like this, is an instant letting off the "pressure valve". Eventhough, it may not help to solve the problem of alopecia, it tremendously help you to cope with alopecia. I have AU since 8 years ago, and I've been on alopecia support network/website for the past 7 years. Some family said, it's a temporary help, not real and even said that I might be obsessive about support groups/website like this...I was angry and I still am whenever I think of those words. But that's one thing to remember, most of the people on support websites like this is genuine, many is having a successful and fruitful lives, living evidences that alopecia patients/ alopecians are just ordinary and in many occasions, people with extraordinary courage, bravery and constant source of inspiration.
My answer to your question..."Can we really accept alopecia'?...Yes we can! but if you put it "can we really accept alopecia 100%?"... may be not.
I am okay with my alopecia, I consider it as a blessing and wouldnt want to change it for a life-time...but it doesnt mean that I am totally immune to the society's perception of people with hair are more beautiful than people without hair. Occasionally, I still get laughs, teasing, insensitive questions from people...I would take the opportunity to educate them about alopecia, when I'm too tired to explain to strangers ... I would just said "fashion"...etc.
Whenever I walk to the department store or hypermarket that sells shampoo, grooming area...I couldnt help myself but being self-aware that I shouldnt be at the area, just like how I am self-aware enough not to walk into a barber shop or saloon.
But at the end of the day, I will not allow things I cant control (i.e. the no of hairs on me) to dictate how I live my life. So, live life to the fullest and live towards your dream and aspiration... occasional temporary setbacks due to alopecia is a reality, so its good to have support sites like this. So, you're not alone and never will be...keep in touch with the people here and make friends.
Like myself, I have already make a few life-long great friends through alopecia support websites....and the friendships only get stronger...:) Take care and keep in touch.
God bless.
Joshua
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Permalink Reply by Cristian on
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Thank you all for the replays. Personally I think we can not accept it, but live with it and try to overpower it, as Susan wrote. I see this sort of a mistletoe vs. tree relation, a hemi-parasitic form of living. It is true that bodily wise there is nothing wrong, at least as much contemporary medical science can tell, but at the level of one's moral it has a major impact.
I also believe that we can overpower it, though not always we can control it. The problem is that sometimes we don't know how.
Probably we need to learn how to be utterly ignorant to the effects of it.
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Hey, I thought that I came up with that mistletoe thing myself, as in, What is the opposite of an alopecian (folliage-wise)? A bare winter tree with mistletoe! Anyway, I see sites and groups like this, or Al-Anon for family members of alcoholics, CODA for family members of drug addicts, and signing schools for the culture of those with hearing impairments, as Family Groups. People in the groups have the emotions, language and concerns that regular friends and family members can never REALLY understand. Single people who move to new places have to piece together a "family" of friends out of strangers, so why can't alopecians do the same in their own towns?
I now butt OUT of my life the people who do NOT get me, and double up my time with the people who do understand. It makes a world of difference to spend my time and emotions with those who say my real name, know my real thoughts, and stay anyway! Some of this comes with acceptance of one's own life, conditions and power of choice...and age. Print and save these responses, and then look at them again 30 years from now.
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Exactly Tallgirl, sometimes in life you're forced to create your own family of friends. I think the problem with us alopecians is that we're very sensitive of peoples reactions to our hairlessness and it causes us to isolate ourselves. The point I made in the story is that more people are accepting than we think. I learned this only recently when I decided to go to work bald each day. Co-workers were the very last people that I wanted to see me bald and remarkably they've been nice and encouraging. I know that kids and teens can be much more cruel than adults, but sometimes there are bad moments anyway--we all have them. I try not to stay in an emotionally bad place for long. I keep in mind that this alopecian journey is a mixed bag like any other life experience. When I keep that perspective, it helps me when someone says something insensitive or worse, when I hate the reflection in the mirror.
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I think, because teens rely on parents to drive and make time for transportation, and because teens only HAVE looks or school events as an option morally (most teens), then all is based on looking from afar at peers, being appropriate at school/church/extra-curricular clubs, and following the rules and schedules of the parents. And, if looking at the cute boy or girl is all one is doing, rather than researching personality or talking first, then it is a real crap shoot if Mr. Handsome or Ms. Popularity have a deep personality or sensitivity to alopecia at all.
I like shows like Glee, where talent leads the story lines and all types of teens are included as the main characters. I also think one might have less rejection by joining clubs KNOWN for depth, honesty, good adult leaders, etc., like arts clubs, future teachers clubs, woodshop competitions on the state level, faith or nature-based clubs, etc. Some colleges offer summer classes for teens, and travel groups are also an option. Then, you can create that family group APART from the school jerks, with the event, craft, project, or club's travel destination being what unites you to the group and provides conversation topics and jokes for years to come. My parents enrolled me in a college art class, tennis, typing, church camp, study weekends, trip to New York and Washington, D.C., etc. I met teens from many cities at those and while on Youth Advisory Council to the Governor, where we stayed in college dorms during the conference weekends. I learned that there were a lot more people and places in the world than that small world of high school students, and my free time communications were with others who enriched, not constricted, my life...even while I had alopecia!
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