Alopecia World
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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?
Replies to This Discussion
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Permalink Reply by Joshua on
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Hi everyone,
I totally understand what Tan B is trying to say and couldnt agree more with her. I would also like to add something, all of us here is either an alopecia sufferer or know a loved one with alopecia, that is COMMON point that why we're all here:
I'm not trying to preach christianity here but all will agree with the wisdom found in the Bible. 1 Corithians 12: 14-17 "Now the body is not made up of one part but many. If the foot should say, " because I am not the hand , I do not belong to the body," it would not for that reason cease to be part of the body. and if the ear should say, "Because I am not an eye, I do not belong to the body,"...if the whole body were an eye, where would the sense of hearing be? If the whole body were an ear, where would the sense of smell be?"
The alopecian community is as of whole community across the world whether we're from NAAF or AW or others, and within these organisations, we were gifted at different areas and also of different passions. These passions and areas that I could identify at the moment would towards ALOPECIA AWARENESS, ALOPECIA SUPPORT, ALOPECIA RESEARCH/TREATMENT, ALOPECIA FRIENDSHIP...etc. All of us here have a part to play, for example Tan B's passion for alopecia is to support others with alopecia, support them with confidence and live life to the fullest, while people like AU-NO-MORE is passionate and gifted to provide hope and the fighting spirit towards a cure for alopecia.
So at the end of the day, no one can say that I'm all for ALOPECIA CURE, therefore I do not need ALOPECIA AWARENESS or I'm all for ALOPECIA SUPPORT, therefore I do not need ALOPECIA CURE.
All I can say is that we need to SUPPORT those with alopecia, so that they don't feel alone. Then they can speak up courageously and let the world know what alopecia is through AWARENESS. At the end of the day, the world will know what alopecia and those with or without hair will work together find a CURE for alopecia through many reasearches and effort. So all of us here have a role to play, no matter how insignificant it may seem to others...because we're all bonded by a single thing which is called ALOPECIA AREATA.
Take care everyone and God bless us all.
Joshua
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Permalink Reply by AU-NO-MORE on
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Very nicely written Joshua, unfortunately the folks on the acceptance side, for some reason, think they occupy some sort of moral high ground. It baffles me to listen to them rant on and on in any tone or manor when they feel threatened by someone who says alopecia sucks; that its a sickness of the immune system not matter how they want to spin it and that it couldnt be more obvious to you or rest of the world, unless perhaps you had a red, flashing nose to go along with it.
I wasnt a pretender when i had AU and i wont be a pretender now....Alopecia is a sickness that needs to be treated as such.
You know i cant believe how dense so many people are. By reducing alopecia to a cosmetic challenge and a statement about self-image, you are all shooting yourselves in the foot robbing alopecia of the attention it deserves. And if it doesn't matter to you cause youre at peace, then i say you have some nerve stacking the deck against every child and adult that hasnt gotten it yet..but will...and might have avoided it, if you Alo-nazis could distinguish between your self-centered inner struggles and reality.
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Here's to thought and vigor!!! All opinions have value. It's refreshing to see vigorous discussions on this site again. After Susan, Thea and other highly educated and articulate advocates on many sides of many issues were maliciously maligned and then gone from this site last year, the sanitizing of comments and the heavy hands of editorial deleting took hold. Ning gave the power of the instant delete button this last year and it was used. A lot from what I could tell. It was a detriment to the vitality of the site. Here's to renewed thought and vigor!!! And if only Thea were here again. What a loss and a lost powerhouse of information for this community.
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Permalink Reply by rj, Co-founder on
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Spenser, please see my reply to YoKasta in this discussion.
I'll only add here that there's no "instant delete button," and if there is one of which I'm unaware, it's not being used by Alopecia World.
We necessarily try to monitor the site to ensure that it's a safe and friendly community, but censorship is not being practiced here.
All the best,
rj, Co-founder
Alopecia World
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Permalink Reply by LilyBell*Murphy'sLawLuvsMe on
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Tan B - I personally think you should leave the post and all replies in tact or it will not make sense - expecially RJ's reply as to why he was suspended.
I am of the attitude that 'it is what it is'. It shows what the person was thinking and how they responded.
The word is totally offensive but he needs to own what he said. It is no reflection on the meanful discussion that you posted.
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Permalink Reply by kastababy on
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You knew it was just a matter of time before I put my $0.02 cents in.
I have been on AW from the beginning. I have blogged, discussed, emailed, phoned, and chatted with thousands of people over the 3+ years the sites has been in existence. Not once during that time have I sugar-coated what I thought of alopecia, how I felt about my looks, or my level of acceptance when it comes to alopecia. I am a human. I adapted to the changes that alopecia brought into my life and the lives of my family and friends. I have undergone treatments of all kinds, and I have been blessed enough to have periods of regrowth. The truth of the matter is I have lived with alopecia for far longer than I have lived without it, and guess what? Life went on anyway, and so did I.
Now, I have blogged before about how the current model of education, awareness, acceptance, and research is missing the advocacy link that so many other support models have, which is the fuel that progress needs in order to find that cure that, quite frankly, alopecia needs. Having your immune system turn on itself and attack an organ in your body (for everyone who forgot their biology and anatomy lessons from school, skin and hair ARE organs), no matter how you spin it, is NOT normal. Alopecia affects more people than lupus, MS, Type 1 Diabetes, Rheumatoid Arthritis, and Celiac disease COMBINED - yet for every 5 studies being conducted for lupus research or diabetes research, there is only 1 for alopecia. Something is wrong with the math there people. It doesn't take a rocket scientist to figure that out.
I've lived with alopecia for 29 years - and even if a cure were to be found tomorrow, more than likely I would either continue to shave my head or keep it very, very short - simply because I live a very hectic lifestyle and I don't have time to worry about styling my hair or even combing it. However, that does not mean that I don't want a cure, not by a long shot. The debate over acceptance and advocacy is actually quite similar to the fights that the Catholic Church led for most of its existence between faith and reason. It is only within the last 100 years that the Church has acknowledged that faith and reason are not mutually exclusive. And just as faith and reason are not mutually exclusive, neither is advocacy and acceptance when it comes to alopecia. You have to accept that it happened and love yourself unconditionally before you can even begin to advocate for an effective treatment, let alone a cure. THAT is the position that AU-NO-MORE is coming from, and it's one that I wholeheartedly agree with. It's a shame that now he has been suspended from AW because of that opinion, and I too have noticed how those of us with the strongest voices are gradually being driven away, and that is a shame, because having all sides of an argument, rather than an accepted "party" line, so to speak, makes you an informed, educated patient, and an informed, educated patient is an empowered patient. And an empowered patient, when there are enough of them, can change the world.
I also think that there is a difference between coping and accepting. Coping is something you do short-term, in the here and now, to get through an immediate situation. Accepting is coping taken to the next level; something that comes with time and something that unfortunately, in 29 years of living with AA, I have seen VERY FEW people do. There are more people hiding and ashamed of themselves and living in a self-imposed exile because of alopecia than there are living, thriving, and prospering in spite of it. I'm sorry if you get offended, but that is the truth of the matter. And chances are, if you ARE offended by that last statement, then very likely you fall into the former category rather than the latter. The bottom line is this: I'm a fervent, passionate supporter of the alopecian community at large, regardless of where your stand is. However, I am sick and tired of seeing any discussion about why we should be stronger and more united in our quest for a cure disintegrate into "I'm quite happy and don't WANT a cure", and then in the next breath hear a million arguments more about why your life went to hell and fell to pieces when you got an alopecia diagnosis. That kind of attitude doesn't do ANYBODY any good. I'm also sick and tired of seeing so many people who have more strength than they give themselves credit for play the victim and demand to be treated with kid gloves over something that is EXTERNAL. I believe, and have ALWAYS believed, from Day One, that if your only valuation of yourself is based upon what's on top of your head, you have far deeper issues than anyone on this site, or anyone without an MD or Ph.D can help you with, and perhaps those issues need to be addressed first BEFORE even tackling the alopecia issue.
Some people will get inspired by my response, most will see the logic in the response, and then there are the usual suspects that will criticize it, very harshly criticize me, and then explain why I shouldn't see things as realistically as I do and then mix no words about the way things are. That's fine. Everyone is entitled to their opinion. But I think it's a damn shame when the ones who fight the hardest for everyone are the ones who are accepted the least.
Who's got a response to that?
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I have lurked for awhile. I do not understand why ANYONE has to be rude when dealing with someone who may not agree with your opinion. If someone calls people rude names they do not even hear what you are trying to say. If the goal is it try to open up others minds to 'your' way of thinking - why use verbal assault as a method of doing so? Yes some on here are VERY depressed about their hair loss - that does not mean that their ONLY valuation comes from their hair - any more than it might mean that a woman who has had a mastectomy and is depressed over the loss of her breast totally defines herself by that body part. Yes cancer is very serious - you can DIE from it - but even after successful treatment for the cancer many women are scared emotionally over the loss of their breast - does that mean they define themselves and derive all their self esteem from their breasts - hardly. Some on here seem to lack human compassion for those that are depressed, seriously depressed over their hair loss and continue to battle on that front. Does that make that person 'less than' because they have not yet gotten over their feeling of sadness over their hair loss. No. Does that mean that person is demanding to be treated with kid gloves - NO. Does that mean that perhaps that person should be treated with kindness and compassion - Yes. I would think people would want to show that person kindness - not rudeness, not name calling etc. It is fine to have strong opinions - it is mean to pick on someone who differs from your opinion - it is sick to pick on someone you deem to be depressed over an issue they are obviously trying to come to terms with by seeking out support on this site. Why go down that path? To what purpose does it serve except maybe to make you feel superior. Having to denigrate someone else to make your point is wrong and if someone needs to do that to make their point then perhaps they have deeper issues that need to be addressed first before responding on this site.
I think Kastababy has expressed almost the same point of view as au-no-more in other blogs and in this one - but she from what I have read is usually given acclaim and kudos for her opinions, and yes I have read some pretty harsh words from her aimed at a select few individuals, yet she is accepted and au-no-more vilified. Why is that. This is meant as no disrespect to Kastababy - just an observation. Is it acceptable to be rather unkind to a few individuals but not OK to be unkind to the 'general population' on AW? It should not be acceptable to be rude and unkind to anyone.
BTW I do see some logic in both Kastababy's and au-no-more's blogs and posts. But I also think that money and research will be allocated to those diseases that kill. In my opinion the only hope for a 'cure' will stem from greed. Greed from the pharmaceuticals companies to make money from a cure. I personally do not care from what source a cure comes from - I do not care if the 'cure' involves me to take a daily pill or potion so long as it is safe. That is just how I feel about my hair loss and what I am willing to do.
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Permalink Reply by R0BB on
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I lost you after the part about the .02 cents ....
( Notice , I used the dry humored font ...lol NEXT ? )
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YoKasta wrote,
> THAT is the position that AU-NO-MORE is coming from, and it's one that I wholeheartedly agree with. It's a shame that now he has been suspended from AW because of that opinion...
YoKasta, as much as I respect and value your opinion and contributions to Alopecia World, I'm compelled to point out that this is not why AU-NO-MORE was suspended. Rather, in direct violation of the warning that was sent to all members of Alopecia World just the a few days ago, he had the audacity to come on here and call members of this community Nazis ("alo-nazis" to be exact). Regardless of what may be a person's opinion of alopecia-related matters, this kind of brazen ad hominem simply will not be tolerated in Alopecia World. As perhaps you know -- many other members certainly do -- we sent the aforementioned warning because personal attacks, which have become more frequent than ever, do not enhance anyone's experience in and of this community. Anyone who believes for one moment that this is appropriate behavior as well as that members of this community are not worth their time should certainly find another venue in which to express him/herself. It really is that simple.
YoKasta also wrote,
> ...and I too have noticed how those of us with the strongest voices are gradually being driven away, and that is a shame, because having all sides of an argument, rather than an accepted "party" line, so to speak, makes you an informed, educated patient, and an informed, educated patient is an empowered patient.
If someone feels that they were "driven away" or that there's some "party line" which Alopecia World officially or unofficially endorses, then this is as unfortunate as it is inaccurate. The position that both Cheryl and I, and therefore Alopecia World, have always taken -- going back even to our old AlopeciaAndLove blog, which predated Alopecia World -- is that each alopecian should pursue coping strategies and treatment options that make that person feel comfortable in their own skin. Cheryl in particular has been very active and visible in alopecia community for over 20 years and has never once proferred the false dichotomy between looking for a cure and coming to some level of acceptance. So the idea that anyone officially associated with Alopecia World has somehow taken one side or the other on these issues is patently false and misleading.
The bottom line is that what's true today has always beeen true in Alopecia World. You and every other member of this site are free to have whatever opinion you desire, but every member of this site must also be respectful at all times and adhere to Alopecia World's advertising policy and terms of service. In other words, all opinions are welcome but offensive behavior is not.
With all due respect,
rj, Co-founder
Alopecia World
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