Alopecia World
Where acceptance is all there is!
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.............
Comment
-
Comment by Lisa on January 17, 2012 at 9:46pm
-
Hello new to Alopecia.I was told on Dec.16,2011 and would like to be apart of a group in NC .Thanks Lisa
-
Comment by Sandra Dubose-Gibson on September 4, 2009 at 9:02pm
-
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.
-
Comment by Tracy I Ridgely-Guthrie on September 3, 2009 at 7:36pm
-
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.
-
-
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.
-
Comment by Cheryl, Co-founder on September 2, 2009 at 11:36am
-
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.
-
Comment by Galvin on September 2, 2009 at 10:51am
-
I have been to NAAF conferences in Norfolk, St. Louis,Tampa, L.A., Wash,D.C.(twice)and Louisville and
I had a great time at all of them. The impression NAAF gave to people was that they wanted to
make sure that there would be hotel rooms available for "newbies". I don't think they want attendance
to be over 600 to 800 (just guessing)...if I go to Indianapolis I might stay at a different hotel.
Jeffrey, I will check out the Medford, MA. I have never been to New England.
Sandra, there are some very scenic areas nearby you in North Carolina. I spent some
time in Pittsboro in 2008 visiting my brother and enjoyed walking along river.
Good topic Sandra thanks for bringing this up.
Gotta go get breakfast...Grape Nuts...
LOL not....bacon and eggs. :)
-
-
You guys are all so yummy! Thanks for chiming in and sharing your thoughts with me.
Galvin, the NAAF conference is for newbies? That's interesting. I have had Alopecia for 10 years but since this year was my first time at NAAF I feel like a newbie. Does that count? I have to say, I'm all about 5 star hotels but it sounds like I need to hook up with you and learn to appreciate the outdoors and simplicity a bit more. My friend Michelle would say that "you've got a little granola in you!" That is meant in a good way. It just means that you appear to be a nature outdoorsy type of person like she is. It's a compliment. I hope you took it as such. Having been born and raised in NYC, I could use a little of that :)
Tracy, do yourself a favor and make the NAAF conference happen at least once. You will be changed from the inside out. I was so hyped up when I left that I flew home without my wig! I don't normally go around without it on a day to day basis, but I left feeling so comfortable in my own skin that putting it on did not even make sense. Can you imagine?
Mary, I can dig it. I don't think anyone wants to be the only one looking different in the room all the time. There is great comfort in togetherness.
Jeff, get that MTV clip on youtube as soon as you can. We want to see you on tv superstar! I want to say, I know him!!!!!!!! lol.
-
Comment by JeffreySF on September 2, 2009 at 12:43am
-
Hi All,
Sandra,
Our local NAAF group is so awesome. We are all really close to one another.
It's nice to have the MD's present to give the medical facts and answer questions.
We have a great time when we go for our tatoo sessions. We have woman here in SF that is spectacular. www.athenaberverlyhill.com is the addy.
I dont have a CD of the MTV True Life episode yet. I'll have work on that and share. This was one of the most emotional and bonding experience I have shared with these friends.
Galvin,
I am truley a NAAF supporter all the way.
There's nothing like being in a place where you are just like 600-800 other alopecians of all ages, races and gender.
I just posted an Event last night for a Get Together in Boston. It's actually Medford MA. It's not a five star hotel in a Downtown City. Check it out. Join in if you like. It would be great to meet you.
Tracy,
You have to go to a NAAF Conference. It will change your life. You will feel so impowered with the experience. Boston???
Mary,
You are normal. You have embraced yourself.
Yours Forever and a Day!!!
Jeffrey
-
Comment by Tuesday on September 1, 2009 at 11:15pm
-
Your last phrase, Mary, is particularly poignant to me. "Sense of being normal"! Yes !
-
Comment by Mary on September 1, 2009 at 5:01pm
-
Congratulations on where you're at, Sandra. I love how you expressed yourself.
What I want most of all is to just hang out and be in the company (particularly in public places) of bald women - women with alopecia who are comfortable being bald. I'd also love to be around guys with alopecia...but what I hunger for is the sense of being normal as a bald woman, not the only one in the room.
Mary
Disclaimer
Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.
© 2025 Created by Alopecia World.
Powered by
You need to be a member of Alopecia World to add comments!
Join Alopecia World