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What do YOU want in a "support group"?
That is an honest question and I really would like to hear the answers from everyone. Ponder it for a moment and let me know what you come up with. I have had Alopecia for 10 years, the last 6 of which have been with Alopecia Universalis. In 2008, I finally got to a place where I feel like I have accepted my ultra petite bald head and this condition. I can look in the mirror again and feel connected to the woman staring back at me. At one point, I disconnected from her and deemed her a stranger. Today she is my friend again. I embrace her and have decided to love her nomatter what. Now I love her in a way that I never have before. Imagine that? All these years going through this, I have never been a part of a support group. I can count on one hand the number of people I had ever met with Alopecia. Being at NAAF this year was the first time I have ever been around so many people with Alopecia and it was amazing. I felt at home and accepted. That is priceless and so very healing in an of itself! I could appreciate the beauty in me on a new level because I saw first hand the beauty in everybody else. The love and admiration I felt for them was the same connection they felt for me. I did not want that feeling to end or just come 1 time a year. As a person who organizes events all the time, it only made sense for me to put those skills to use to create something that would satisfy my soul and so many others. I decided to start a group called "The Alopecia Community of the Triangle". I have some ideas for what I want it to look like but more importantly, it needs to be what YOU need it to be. I can't play in the sandbox by myself. So level with me, what does a successful support group look like? What ingredients does it need to have that would make you want to attend? I hate to say "support group" because it has such a sad connotation to it. Now, don't get me wrong, I am all about cleansing tears and expressing emotions but I am not about consistent pity parties. I believe that after we express our feelings, we turn that frown upside down and talk about solutions. It has to be a place where there is love, support and positive affirmations. A place for friendship, fellowship and FUN with genuine people that are kind. A place for women, children, teens and men. For parents with children who have Alopecia and partners/loved ones who love someone who has Alopecia. God knows I am sure my husband would have benefited from having someone to talk to on those mornings I would not stop crying and could not come out of the bathroom! Those are some of the ingredients that I need, tell me what kind of group you would like to be a part of? The truth is, the people make the group so whatever we say it will be, it shall be! I am here for you. Tell me what you want.............
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Comment by Cheryl, Co-founder on September 2, 2009 at 11:36am
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I agree, that a support group has to have a positive direction. One that edges people out of the "victim" mentality and into seeing our personal choices and taking our power back. We need to see more the potential impact we can have on others. I don't think alopecia is just about alopecia, but also about triumph, many of us have encouraged others, not just in the alopecia circles, but with other peoples personal struggles as well. I found that a lot of people joined Alopecia World for support and before you know it they are offering support too. I think a face-to-face support group has the same effect, we get lifted out of the water and then we turn around and hold out our hand to help the next.
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Comment by Sandra Dubose-Gibson on September 3, 2009 at 1:19am
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Galvin, I plan to do the mountain thing down here. I did not get to make that happen this summer:( There is a fabulous spa there I heard! lol Afterward, maybe I will take a scenic stroll down the river :)
Cheryl, you are right on. It is all about triumph. Hair is trivial, it's really about what is going on inside. The coolest part for me is knowing that there is no place of "arrival". I still have bad days and to be honest, I would not choose to have Alopecia if I could choose to make it go away. I would be rocking a funky mohawk tomorrow to celebrate! lol. I'm just saying. But since I can't choose, I can choose to help someone else and in turn that helps me feel better. Giving love boomerangs. It always comes back to you. We may not be where we want to be, but we can always reach out and help someone else get to where we are.
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Comment by Tracy I Ridgely-Guthrie on September 3, 2009 at 7:36pm
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Giving love is important,and so is receiving love. I work in a hospital and I love being a nurse, what I have learned in my career that some people may be sick but what makes them feel better than any medicine I could give is a hug, sometimes I just sit down and talk to them and it makes all the difference in the world to them and me.
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So true Tracy. It also makes all the difference when you receive service from someone who truly loves what they do! You can tell that they are sincere. You were made for that and I am sure your patients are always so glad to see you coming. I always wanted to say that, I love what I do for a living. Unfortunately, I still work a 9-5 and the things I love to do don't put food on my table, for now. It does however bring joy to my heart. Priceless.
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Comment by Lisa on January 17, 2012 at 9:46pm
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Hello new to Alopecia.I was told on Dec.16,2011 and would like to be apart of a group in NC .Thanks Lisa
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