Alopecia World
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Coping.. how do you?
Just joined today. And was thinking to myself, why havent I found a site like this before? Well in all honesty I never was able to talk to people about my Alopecia, kinda just went on about my life pissed that I had no hair and had to wear wigs... Welp Im totally over that! There are others like me out there. And this may sound weird, but that makes me happy! Im not alone!
I had and am still having a difficult time coping and thought I would ask some fellow Alopecians how they do it????
I had and am still having a difficult time coping and thought I would ask some fellow Alopecians how they do it????
Replies to This Discussion
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Permalink Reply by Zoey on
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I believe accepting it is the first step. (Sounds like an AA meeting) lol
It took me many years to accept and be okay with it, I would only wear wigs for the first 6 years. Until I wanted to go out on a boat soo bad, that I got about the only scarf that I had owned-before my hair lose and wrapped it around my bald head..
Oh geezzz I can still remember the anxiety and stress of walking out that front door.
But, once I did it.. It felt sooo good! Now it is reverse.. I just wear my wig's when I go to work.. Other than that you will find me in my scarf. :)
I still get a little uneasy when I am out shopping or at the gym and I have people come up and ask about my cancer... (geezzzzz) I then have to go into the whole ordeal about explaining to them that I am healthy.. Just do not have any hair on my body.... :)
I too was so happy when I found this site.. I have never meet in person anyone with alopecia. I am excited and hopefully get to soon... I hope to attend the next conference..
Zoey
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Permalink Reply by Steve on
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Zoey, you are so RIGHT! It IS just like an AA meeting! The process is exactly the same. The personal issues are very similar.
Regarding the "cancer" assumption for some people. It just shows how observant people are. Yes, chemotherapy can cause temporary hair loss, yes, it's a devastating disease. But people who are going through that horrendous treatment LOOK like they're going through that horrendous treatment! Alopecians, by and large, look healthy, have nice shiny scalps and clear eyes!
I once belonged to a different alopecia list service and I recall a story of one those members, a woman who had been AU for some years, and how she agreed to attend a group coping session for cancer survivors. As the group introduced themselves one at a time around the circle the alopecian stated her name and explained that she had no hair because of alopecia. She then got the shock of her life. The other women in the group, the ones who were literally fighting for their lives with that incidious disease, all felt sorry for HER! "I don't know what I'd do if I didn't think my hair would come back." "How can you seem so happy without hair!" "Oh, you poor thing! However can you cope with such a devastating loss!" etc. My friend was shocked! It never occured to her that non-alopecians can never accept that hair loss isn't associated with some terrible disease! She got right out of there because she felt her presence was detracting from the purpose of the meeting!
Wow, I'm rambling today! Let me get off the ol' soap box now. - ;)
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That is amazing... I have never been to a meeting.. Would love to attend one.. But I will only attend one that is for AU :p
Zoey
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Permalink Reply by Rose Marie' on
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Hi Casey
How lovely that you have found this site. I think it's a really great site with a very diverse community who accepts and helps all.
I don't have alopecia my 17 year old daughter has AU and she has for the last 5 years.
I agree with you that meeting others and talking to others with this condition is priceless. I live in New Zealand and help people there with wigs etc. So, Libby my daughter has been totally immersed in alopecia for the last 3 years and for the two years before that I was very proactive with finding and talking to others with this condition.
I think it is a real must to get together with people who feel the same and now you have found this site you will have a ball.
Maybe one day you and my daughter may meet at the Naaf meeting. That is truly an inspirational place to attend when you have this condition. So, that might be something you and your family look to do in the future.
I'll look forward to getting to know you in the future.
Take care
Rosy
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Permalink Reply by Casey on
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Hey there Rosy! Thanks for the comment! My mom has been tryin to get me on sites like these since we found out i had alopecia! im tellin you moms are always right! i should have listened! but im here now!
Ive been to a Naaf meeting before long time ago in california! me and my mom. it was nice. i remember it being pretty emotional for me though.. it was early in my alopecia. but i would love to go to one now! and meet people!
i cant talk right now but i would love to talk to you more in the future! ;o)
have a lovely day
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Permalink Reply by kastababy on
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The simplest way to cope (if you want to use that word) is to just put one foot in front of the other and keep on going! John F. Kennedy once said, "A journey of a thousand miles begins with a single step." So keep taking single steps -- one day, you will look back on your journey and be amazed at how far you've come, a single step at a time!
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Casey, the hardest thing for a new alopecian to accept is the fact that their hair will never be the same as it once was. It's a hard thing because without realizing it we tend to let others judge our appearance and succumb to peer pressure and fitting the "norm". Every alopecian goes through a grief process, all the steps, just like someone very close to you has died. Anger, guilt, resentment, anger, and oh yeah, anger! We're human, that's not an easy thing to change.
Coping comes when you realize that you are still the same person you always were, just someone who can't grow hair anymore. You place more value on how you feel about yourself, how much you respect your self. Finally, you begin to believe that "it's only hair" and what's to stop you from doing what you want to do? The obvious answer is: NOTHING!
I suppose you can trivialize the process by saying, "Just do it!" That doesn't give any respect to the process that gets you to that point in attitude.
I'm speaking from experience. I've been AU for 49 years now (yikes!) and I can't remember when I had a normal head of hair, or eyebrows, or eyelashes, etc. etc. So, this is me and I just go out every day and live my life without even thinking about alopecia. Every new situation or group of people I meet just accept me for who I am and sometimes, just sometimes, I will get The Question when someone notices I don't have eyebrows, eyelashes or hair on my arms.
And that's OK. People can be genuinely curious because they care. It's been years since I've had to deal with real negative people because of my esoteric haircut!
Having said all this I realize I'm a guy and it is definitely different for gals to go au natural. All I can say to that is it really shouldn't matter which gender you are. We ALL need to live our lives and when you get right down to it, why can't we? The only people who can stop us are the ones living in our heads!
Coping is something we learn. Once learned, we move on.
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