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.............

Views: 27

Comment

You need to be a member of Alopecia World to add comments!

Join Alopecia World

Comment by Tracy I Ridgely-Guthrie on September 1, 2009 at 3:45pm
I have never been to a conference, but it sounds like I need to be at the next one, how do I find out about that? What I would love and need from a support group, is comfort and understanding. Sometimes I need a chance to just vent or cry or even laugh with brothers and sisters who understand because they are going through the same thing. Alopecia is a big part of who I am, but it is not everything and sometimes I need to talk about that too. I like what Galvin said about the low-key meetings also, I would do both
Comment by Galvin on September 1, 2009 at 12:34pm
I would like to be able to attend an alopecia gathering that is not at a five star hotel in a downtown
area. NAAF is great for "newbies" but it would be nice to attend something a little less expensive and with
some outdoor activities, beach, ski resort, camping....whatever.
Comment by Sandra Dubose-Gibson on August 31, 2009 at 10:06pm
Hi Jeffrey. Thanks you for sharing that with me. That is a great idea to have medical doctors attend and answer questions. I will definitely make that happen once we get things off the ground and have dedicated members. I would hate to invite a doctor and have little attendees. So, bald boyz do lunch and you have a dedicated person to do your tattoos? I want in! lol. Where can I check out the MTV True Life video clip? I would love to see that. That must have been a blast. I believe you captured the essence of a support group when you said, "Relationships that build charactar and strength. Creating a bond that will last forever and a day." That is what I want to be a part of and hope to create at A.C.T. If anybody out here in the Carolina area wants the same things I do, I sure hope to see you there.
Comment by JeffreySF on August 31, 2009 at 8:53pm
Hi Sandra,
I know exactly how you feel in regards to the NAAF Conference.
There is nothing else like it. It is so so good for the soul. I have been twice now. One for each year with alopecia. It's an event I will never miss if I can possibly help it.

I am also faithful member of the San Francisco Local NAAF Support Group. I have so many awesome experiences from attending the meetings and the get togethers.
Some of the stuff we do:
A group of friends meets for pizza before the meeting.
At the meetings we have an introduction of ourselves and share our emothins and experiences.
There is laughter and sometimes yes there are tears. But thats okay. It's about supporting one another. I find support brings strength and acceptance. Not a sad thing at all.
We also have Dr Vera Price and her Medical Fellows at the meetings for any medical questions and answers.
After the meetings we might go for a drink.
More stuff we do.....
Bald Boyz do Lunch before we go see Athena for our eyebrow tattooing
We had a TequillaPalooza at Tommys.
We were on MTV True Life.
A group of us from the NAAF Conf and friends at Alopecia World are now going to Boston for a get together.
Who wants to join in on that???

So what do I want in a support group. Exactly what I have. Relationships that build charactar and strength. Creating a bond that will last forever and a day.

Jeffrey
Comment by Carolyn on August 31, 2009 at 7:04pm
Hi there! so excited you are doing this. I don't really know how to answer your question, other than to say, just to be in a community/fellowship of people who understand what we go through. Meeting Debbie Fulller who is the Freedom Rep in the area, was a powerful experience for me!! Just sitting next to someone and having them pull off their wig was GREAT!!!! I'm very interesting in attending! Let me know what I can do to help!

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.

© 2026   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service