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Bad Week Here - Want to Clarify

Discussion in 'Women's General Hair Loss Discussions' started by Joann, Nov 4, 2012.

  1. Joann

    Joann Moderator

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    Hi Girls,

    There was no apt forum to really post this message.

    When I chose to become a volunteer moderator her my main reason was to give back the support and help that was given to me when I first joined Her Alopecia & other online Alopecia Areata support groups as well . I wanted to ensure that no one would ever go through my Alopecia Areata experience if I could help it. I also wanted to keep the forums drama free with respect for difference of opinions etc. After all we are all individuals. I wanted to ensure that people are free to express their thoughts and opinions provided they were not giving possible offense to another member.This can be hard with only the written word because when you are not actually speaking face to face and hearing tone or seeing body language it is easy for misunderstandings to occur.

    Her Alopecia has a warning system in place. If I feel a member needs a head's up on something they have written I will issue a warning & remove their message. The only people who know about it are the member and the moderator. The warning disappears in 3 months.

    Unfortunately, I had to issue a warning recently. The member had walked a thin line on occasion but I knew they were truly struggling so I was lenient. However, a message was written by them that needed action on. I felt there were a couple of lines in it that warranted a head's up hence the warning. Things could have gone on as they were. However ,the member was greatly offended and felt an apology was necessary. They felt they were being censored unfairly.

    The call I made was based on years as moderator not only on HA but on other Alopecia Areata online support groups. I don't take giving warnings lightly. I can't remember the last time I issued one here but it's been well over a year or more. A member is alllowed three warnings before a ban is placed on them.

    I'm not going to go into all the subsequent details but I did need to talk about the warning system for those who might be unaware of it. We did have it on the old server as well. When they are given it's not done with malice or prejudice at all. It's purely a head's up. Be careful. You came on a little too strong with some of your words.

    As a hairloss sufferer it hurt me very much to hear from this member about how they perceived my support and help. One hairloss sufferer to another.

    "Over the months I've been here, I've found you to be insensitive all over the place. Passive aggressively. But you think you are helpful. You have made me feel like I needed to walk on eggshells for months now. But again, you think you have been only kind and supportive. I've found quite a few of your posts to be utterly discouraging."

    Part of my own healing process through these past 8 yrs.has been the belief that I have made a difference for others with hairloss. I try to give people hope but I do let them know that there is no Alopecia Areata "cure" as of yet. That is so some of the armchair doctors saying this or that is a cure, ready to take advantage of people who are vulnerable, can't fool them . It may be discouraging but it is the absolute truth something I was totally unaware of fighting my own hairloss battle.

    I do have respect for what the NAAF organization has done for me and countless, countless others . If others feel they should have arrived with a cure in the last 25 years they've been in operation, their agenda has always been to provide help and support, promote Alopecia Areata awareness and also research for a cure. If another organization wants to focus solely on a cure , no problem about that as long as there is accountability and transparency and no bashing of other support organizations. I know what's it's like to be totally on your own coping and though a cure would have been welcome at the time, I had no cure, no support or help and no one promoting awareness.

    I have also been trying to tell everyone who has hairloss in their lives albeit from Alopecia Areata or from other conditions that no matter the outcome ,severe loss or full recovery, life is beautiful and better days are ahead. I have seen firsthand that those who are as proactive as possible when the hairloss is difficult are the ones who seem to achieve this joy& peace in their lives again. Those who are stuck in one place and want the quick fix and want it now, may find their struggle is more drawn out and difficult. It's my personal observation. That's all.

    If my way of giving help and support is not perceived as such I have failed in what I set out to do. I know I have obviously failed this member which does not sit well with me. I had hoped we could connect one hairloss sufferer to another but saw the possibilities of that were non-existant as far as they were considered.

    Joann
     
    #1 Joann, Nov 4, 2012
    Last edited: Nov 4, 2012
  2. Josie's mom

    Josie's mom Guest

    As a new member here I would like to express to you my personal opinion. You made me feel welcomed here and I truly feel you care for the people here. Reading your comments throughout the forum I really sense that you come from a place of compassion and genuine care for others.
    xxx
     
  3. Joann

    Joann Moderator

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    I so appreciate hearing that from you Josie's mom. My self -concept is so much better now than in my younger years but these words ,given by someone who I have truly tried to help & be there for, have affected me in a very negative way.

    Joann
     
  4. The Chook

    The Chook Member

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    I've been impressed by the compassion you have shown, particularly to newbies.
    I've learnt over the years that in every group there is someone who will take offence at something. It's just a fact of life. Try not to take it personally. Hugs to you.
     
  5. snowflake

    snowflake Experienced Member

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    Joann I don't understand why she feels this way. You are like a mother hen (lol avatar above me) to us all. I see you want to give the help and support you never got. Sad.
     
  6. fleur1979

    fleur1979 Experienced Member

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    Wow, i think that is so weird that she wrote you something like that Joan.

    If i read your messages or replies on here, i believe they are very warm and supportive...

    Don't let it get you down. I bet nobody will agree with her...
     
  7. Lost

    Lost Guest

    Well joann I can't speak for others but your kindness has helped me more then you'll ever know!! When you reached out to me when my grandson developed Alopecia Areata your pm's help my daughter and I understand what he was going through his hairloss is defferent from mine but I did have a hard time not blameing myself...You helped me relize it is nothing I could control. Try not to let one person deflate all you do here and all the people you have helped!!! take-care (((hugs to you))) D.
     
  8. Tori

    Tori Experienced Member

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    I can only assume this person is new to the site and possibly going through the initial struggle of hair loss? If so, I can understand the hostility, though it's in no way an excuse. You didn't deserve that, even if you've been misunderstood somehow.. there are far more mature ways to handle these things.

    I've been a member here since, I believe, 2007? And I was reading long before I joined. I'm not one for making connections online.. in fact, I have a hard time remembering who's who because we're all faceless, even with avatars. Someone could post a million times, but each time I read their posts, it's their first to me. Unless they stand out for whatever reason, which you have. In a sea of similar posts and questions and stories, there are just a few that have stood out to me. You have shown such compassion and encouragement and HONESTY.. all of which I value and respect. Please understand (though I know you do, it's hard to not take these things personally when they're happening) you can't please all of the people all of the time. There are always going to be people that read you wrong or don't appreciate what you're trying to say or do. And in a place like this, it could be that they are struggling quite a bit and I notice that people that are fairly new, tend to take offense easily when there is any hint of this not going the way they want eventually. It can add to the despair. These are the people that need the most patience and you, of all people, are the person for that job. As much as the words bite and as much as they bother you, just focus on what is behind them and what is truly fueling them. This person is probably hurting quite a bit.

    So give them their warning, as that's an unfortunate part of the job, and just keep on keepin' on. If they have been here as long as some of us have, then I'm truly disappointed. You've been so unbelievably supportive without misguiding anyone, which I see happen a lot. On the other hand, if they're new.. maybe a break to gain perspective is in order. They are obviously bitter, understandably, but again, it is in no way an excuse to take it out on others or expect the facts of hair loss to change for them. They are jagged pills to swallow for sure, but it's not your fault, or theirs, and they need to realize we're all here for the same reason. Support!

    I'm sure you've been nothing but respectful towards her, whether she liked what you had to say or not. Hopefully she takes that into account and gives the same in return while you work this out xo
     
  9. Lily

    Lily Senior Member

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    Hugs to you Joann - you have such a kind heart and do a great job!
     
  10. somegirl

    somegirl Guest

    Joann,
    I've written this before, after reading one of your soothing and enlightening posts - you are WONDERFUL.
     
  11. PennyBlossom

    PennyBlossom Guest

    I've been a member here for years. Though before I did have a different screen name, one which I was unable to recover after the restructuring of the forum. In any case, I just wanted to say that I have always found you kind, considerate and patient. I remember when I first joined this board many years ago and was having a very difficult time dealing with my hair, I was incredibly discombobulated and emotionally unstable. It took me a lot of time, as well as finding a solution to my hair loss to be able to regain a healthy perspective. Before that happened, this board, yourself included, provided a great deal of help to me, for which I will always be grateful.
    I know it can be very stressful being a moderator here, or probably any online forum, and I appreciate all the work you do to maintain a supportive environment for us all.
    I have no idea what transpired in he past week that necessitates this post but I wish peace to all involved.
     
  12. Janie-Ann

    Janie-Ann Guest

    Hugs to you, Joann. Sorry you're feeling down. It's your sensitivity that makes you such a good moderator and a fabulous member of the forum. But it's that sensitivity that makes you vulnerable to criticism. Try to keep in mind that anger is a stage of coping with this horrible mess, and sometimes that anger gets directed at anyone trying to help. Hang in there!
    xxoo
    J-A
     
  13. dancer

    dancer Experienced Member

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    I could not have worded this better!

    Joann I dont think you should even consider that you have failed,I think sometimes we have to accept we cant make the connection we set out to achieve however hard you try, and you definatly tried, you were always kind and honest. I think the words of all the ladies who have posted on this thread speaks for itself. Try not to let this get to you, you have enough to deal with at this time.

    xxxxxxx
     
  14. Din

    Din Established Member

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    Joann,

    You were always here to give us support. You always take your time and try to comfort anyone who is feeling down. hair loss is hard, and its a thing that no one really understands until you go through this yourself. You gave so much of yourself and your time here, and I am sure you are aappreciated by almost everyone here. You sure helped me a few times and that I will always appreciate and remember:)
    Din
     
  15. AmyCE

    AmyCE Established Member

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    Looks like my PM didn't go through so I'll just say quickly, to add to the chorus, I have found your particular brand of support to be both honest and incredibly sensitive. I have received so much useful information from you this year, in addition to coping mantras that really do get me through this time: that I'm more than my hair; that until there is a cure, finding a doctor you trust and treatment you feel good about is important; that there is hope. I know not everyone is ready to be hopeful and it's more a shame for them that they can't gain some comfort from those that are. Keep doing what you do, Joann. Both providing the support you do in your messages and keeping these boards civil so we all have a supportive place to meet.
     
  16. starshine

    starshine Guest

    Joann, I joined this group after reading many of your posts. You gave hope as well as good advice and I felt your comments were truthful and heartfelt. Please don't ever feel that you are not helping, as you have made my own journey and decisions with Alopecia Areata easier to deal with. It means a lot to me that you have experienced first-hand what we are all going through, although you did not have the benefit of any support at the time. Even so, you genuinely care about each and every one of us. You are wonderful as moderator on this site.
     
  17. Joann

    Joann Moderator

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    Girls, I will be back to write more later but right now I just want to say a heartfelt " THANK YOU " for the wonderful outpouring of support and kindness. I've had a rough time of it recently and just knowing that each of you took time not only to read but reply means so much to me.

    :grouphug: to all,
    Joann
     
  18. snowflake

    snowflake Experienced Member

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    Hang in there Joann. I have been thinking of you a lot these last couple of days.
     
  19. Rodney412

    Rodney412 Guest

    Joann,

    You are very compassionate and I believe genuinely care and soooo want to offer help whether it be advise or information. Thank you for what you do!
     

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