Different groups, different views, different ways of coping

This post ain't to upset anyone in particular. But I find that people have different ways of coping and how they look at their alopecia. And I also find some groups outside of aw spread different messages to their fellow members. These messages are from alopecia is not normal and should be cured to you are beautiful bald . And I want to highlight since alopecia is different for everyone.How they cope is different too. And sometimes you find sometimes different people's way of coping is different from you. Don't let that affect your progress in coping and make you upset that you can't cope well. My message to every alopecian out there.. I don't really care if you have hair or no hair. I find you all beautiful and handsome and in your own right. And the only thing I want for everyone is that you are happy and you are doing it your way. From cures to finding options. As long as you are happy with it. You shouldn't care for what other people say about it.. And if you are not happy with alopecia. Don't give up because there will always be a light at the end of the tunnel. That is my message to all alopecians out there. Now what would you add to this post to make everyone coping feel better about themselves and warm inside?

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Permalink Reply by AU-NO-MORE on July 24, 2011 at 3:45am
You're wrong: this is about right and wrong....there is a right or wrong way to deal with alopecia.

While it may be fine to cope with it however you like, its not OK to tell people, or pretend, or advocate that its not a sickness to others.

It is a sickness no matter how anyone wants to spin it to make themselves feel ok. Anyone who says its not a sickness and minimizes it, is really a very self-centered and short-sighted person. By doing that they are taking away from the steam that might be used to stop alopecia before it become a new life-altering challenge for future children and adults.
Permalink Reply by Mallory Crowner on July 23, 2011 at 10:53am
I don't think Alopecia World is a place to come and start attacking others because THEY have ACCEPTED their AA/AU/AT. Coping is coping. If the way you cope is to lash out at people for feeling great about themselves, you need more than a website and a cure to help you there. Check in to therapy.

I will agree with you that I tend to like some things better than others, be it brands of cheese, shoes, computers, and dog breeds. However, I wouldn't go as far as saying that me being bald and accepting it of myself and being confident is an all out farse or lie. I felt I needed to nut up or shut up. I could sit in my bedroom for the rest of my life and wallow in my poor, pitiful "I don't have any hair, someone come and save me" sorrows OR...I could change my attitude. Having hair and not having hair have not kept me from doing the things I want to do and love.

I haven't forgotten what it was like to have hair, but I will admit, I complained about it when I had it and kept it quite short because I wasn't in to spending hours on making my hair look good so that I might feel good. I will also admit that I'm quite envious of my female friends and family members when they get theirs colored, cut, and/or styled. I love some of the styles out there today, but I don't go home and want to kill myself because I can't be like that. I mean, really, I could be like them. I could go buy wigs of every length and color and have a different, crazy hairstyle every damn day of the week if I wanted, but I choose not to. It's not me and it was never my personality to begin with.

I have a fundraiser every year, we raise money and send it to NAAF in the hopes that money is used for research and/or helping someone else that is struggling with their loss. NAAF gives out scholarships every year for people that can't otherwise afford to go to their conference. I would rather my money was used to help someone figure out some self acceptance than be used to fund a cure. My alopecia hasn't killed me so I tend to take advocacy efforts to that of cancer and diabetes. I can live a long, healthy life, but my cousin with Type 1 Diabetes may not be able to and I've already lost friends and family members alike to cancer so I'm sorry if I'm not the first on the cheerleading squad for the research to cure an angry bald lady like you, AU-NO-MORE.
Permalink Reply by R0BB on July 23, 2011 at 5:06pm
AU - NO - MORE wrote :

" I have some advice Tallgirl and Lori: instead of throwing in the towel for you and everyone else, how bout you get motivated by something that touches your life everyday and get busy pushing for research, treatments, and a cure!. "
____________________________

LOOK here -

After 31 years of living with my AA .... in the past year Ive stumbled across people such as TALLGIRL,ALICE,SINS, LORI , NORM , TAN B , and 100 plus other friends right here on this website.

Throwing in the towel is exactly the OPPOSITE way I feel since meeting them and regaining ME once again.

See , in between the trigger ready , and my way or the highway attitude and preaching , you need to consider the following :

I needed help getting up in the morning with a smile on my face ..and I needed it NOW.
I needed support from others that understood what Ive dealt with for 3 decades.. and I needed it NOW.
I was in need of a mindset change that would give the strength to go another day without hating the way I looked.
I wanted to find out if there were other folks on this fear sucking planet that didnt give a rats behind what my head looked like.
I wanted to LIVE AGAIN .

Yep.. and I needed all those things NOW.

I didnt care about
"STRIKING NEW DISCOVERIES IN ALOPECIA TREATMENT "
or
"SCIENTISTS MAKE REMOTE LINK TO SOME GENE THAT MIGHT BE SPELLED LIKE ANOTHER GENE THAT MAY OR MAY NOT BE
A TREATMENT FOR ALOPECIA "

I read , I informed myself , I tried , I hoped ... for over 3 decades.
ENOUGH .

30 plus years of all the Alopecia research Ive looked into has produced ZERO results in my eyes. Ive stated in previous blogs
( THE ONES THAT HAVENT BEEN DELETED BY THE POWERS AT BAY )
that the squeakiest disease/affliction gets the grease. Alopecia isnt even a disease in my mindset - its a condition .
Until we start dropping like flies because of the mental effects of Alopecia , or the sun becomes hotter and burns the top of all our bare heads ... I dont see any genuine treatment / cure comin down the pike anytime soon.

Im a realist . You be anything you'd like .

My choice was to embrace all the positive results Ive found in the people Ive discovered here.
Some of them , embrace thier choice to be smooth as a babys ass up top -
Some dont.
Some hope for a Witch Doctor MIRACLE cure and are ready to mortgage the house for it
Some dont.
Some start crusades masked with therapies and other agendas that may or may not mis-inform and rip off.
Some dont.

I for one , will handle whatever comes my way ..... MY WAY

You for one .... should handle your struggles , hopes and dreams YOUR WAY.

In the meantime -
Dont you dare get up on your half a soapbox and criticize us folks that have found the strength, self worth and confidence they had lost long ago or never had at all.

SHAME ON YOU .

Good luck with your MIRACLE POWER CRUSADE : But be aware ,
You just might need us kind understanding folks if that AU comes back to haunt ya someday :)

Permalink Reply by Michele Mae Godlewski on July 23, 2011 at 8:11pm
AWESOME!
Permalink Reply by AU-NO-MORE on July 24, 2011 at 3:22am
My response to you is im sorry that for 30 years you were falling apart and couldnt come out from under your rock until you found the people here. Although the way you talk makes me think you belong in a cave anyhow so you were probably in the right place.

But seriously, why do you all of you people think that if you speak from your emotional perspective you can say whatever you want, anyway that you want, yet if i choose to take a stand from the other side that gives me less right to speak honestly. All of you grow up please. You can live til the end of your days with alopecia...and do nothing...that's your choice, but its not mine.

I really could say so much more, but honestly, i think you're such a very crude piece of work that you're not worth it.
Permalink Reply by R0BB on July 25, 2011 at 12:17pm
Permalink Reply by Bald and Fabulous AKA Terri on July 25, 2011 at 9:21pm
AWESOME ROBB you ARE TOTALLY FRIGGING AWESOME
LOVE YOU
Permalink Reply by Bald and Fabulous AKA Terri on July 25, 2011 at 9:28pm
AWESOME...TOTALLY FRIGGING AWESOME ROBB
LOVE YOU
Permalink Reply by Neil on July 26, 2011 at 8:05am
AU-NO-MORE:

I agree with what you are saying here with regards to personal preferences and I personally believe that the medical community should be taking this more seriously and looking for a cure.

Other than that I think you completely missed the point of this post. Alopecia is a form of adversity like so many others, and adversity can make people stronger depending on how they approach it. Stronger by caring less about what other people think of you and being more concerned about how you feel about yourself. Different people have different experiences with this condition and different ways of coping. Just because you could not get past other peoples superficial judgement of you doesn't mean that others can't.

Also your final statement is just plain false. When newly diagnosed with alopecia I refused the shot in the arm "cures" because they had negative side effects and/or did not really cure the underlying condition.
Permalink Reply by Michele Mae Godlewski on July 26, 2011 at 8:33am
I was invited to this site by my daughter, who was diagnosed with Alopecia during her senior year of high school. Soon after she married, it progressed to Alopecia Universalis, and she has been completely bald, and totally hairless, for about 7 years now. I have only visited a few times, usually to a link that my daughter brings to my attention. I responded to this discussion on my own, curious about "different groups' different ways of coping"....I honestly believe (or did), for the most part, that the people here are in search of something positive to grasp. Of course being bitter and angry is part of the road to acceptance, part of the blow to a person's self-esteem, part of what it takes to rebuild confidence...but to be so full of that bitterness and anger for two decades tells me that there are other issues for AU No More. I am thankful that my daughter continues to strive to keep a positive outlook, and also strives to help others attain one as well. At first, the comments made by AU No More made me just a little bit pissed off...after coming back here numerous times to see the comments made by so many others, well....I just feel sorry for the guy. He sure has been missing out on a lot, like....LIFE!
Permalink Reply by Ktownnana on July 23, 2011 at 7:51am
Tan B, I think you pretty much said it all. I've only been a member of AW for about 2 weeks and I am already feeling more comfortable that I've even been in the years I've had it and have even shared with several people about my condition. Before I got on this web site, I would NEVER have done that.
Permalink Reply by Tallgirl on July 23, 2011 at 8:24am
Another turning point is meeting at least one other alopecian face-to-face in a support group, where you can TALK and SEE for real. Once I did that (mid-forties?), I felt more "normal."

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