Comment by Jana on July 17, 2013 at 6:32pm

We are not the only disease community that borrows the word acceptance from the five stages of grief, which are about dealing with loss through death. These stages can be modified for disease communities, and I would love to see us do that re: alopecia.

I believe we each need to choose the path that is right for us. A psychologist named George Bonanno speaks of resilience trajectories. Last year I took a deeper look at his work and designed the following model, which I have been sharing in community: http://www.aaaf.org.au/index.php?page=support-aids

Comment by Margaret Brennan on July 17, 2013 at 6:37pm

I read your story and thought of my own journey. it is so difficult having diseases that refuse to be cured. My body has been at war with itself for 67 years. I have tried all the cures but to no avail. I think you are smart though to eat well, take nutrients and exercise to make sure you are as healthy as possible. you might not grow hair but you will be operating at your best. I will never accept this disease but I have learned to live with it on my own terms. good luck but don't spend all your money on treatments, spend it on lovely clothes, hats, scarves, hair, whatever you choose. Buying great hair was the best thing I ever did for myself.. changed my life.

Comment by youarebeautiful on July 17, 2013 at 6:52pm

I'm so proud of everyone on this site.

Kim, hang in there. I had many of these tests done as a young girl. As an adult, I've had doctors to examine my scalp. I went with a costly hair replacement company for a few years, but found I did not want to part with my money$$ anymore. Now, I just choose various wig style because I can take them off when I get home. I like the idea of feeling my head.

I'm having a lot of problems with fraying ends of the wig, especially in hot weather or after sweating. Does anyone have suggestions for this?

I also have skin problems which are made worse by the hair fibers. Sometimes I feel like such an oddball.

Though I'm told the wigs I choose look very nice, I do get people who stare and stare and examine my hair while talking to me. It's like when some people look at boobs. . .they look at my hair instead of looking into my eyes. How annoying. I usually just give them a direct look in their eyes or look at some flaw they might have.

God Bless You all.

Comment by youarebeautiful on July 17, 2013 at 6:53pm

Acceptance is wonderful on my strong days. On my struggling days, acceptance is hard to come by. On those bad days, I try to focus on other positive traits that I love about myself. Thanks for your support, everyone.

Comment by Weston D on July 17, 2013 at 6:58pm

We all have accept that the sun shines. After that its our choice to find a cave, build a house, or get a tan. Whether we stick to one of those choices over time is a choice all on its own.

Comment by Mya'sMommy on July 17, 2013 at 7:25pm

We decided to just "let it go" when we realized the stress and constant questioning was probably causing more harm than good for our little girl. (She was diagnosed at 2 1/2, she is now 4). Now I don't wish her hair to grow back because I know how unpredictable Alopecia is. I want her to accept her sweet bald little head and love it, so we have just stopped and accepted it so she can too. I don't feel like its giving up, we will never stop hoping for a cure. We are just trying to give her the best life she can have, and I believe that is acceptance of her pretty bald little head!! :)

Comment by boo. on July 17, 2013 at 7:52pm

I believe accepting and giving up are 2 completely different things. I have had AA just before I turned 18 I am not 21 and I have finally accepted it is part of my life I don't let it phase me and I make a joke about it because that is my coping mechanism. But I will never give up with trying to get rid of it I am constantly researching and trying anything I'm given. I will not let this beat me but I think to be happy within yourself you have to accept it to a certain extent, you can't let it get you down.

Comment by Tovah on July 17, 2013 at 8:13pm

I have accepted my AA. I've had enough years to get used to it. When a medication brought on extreme shedding recentlyh=, I had to cut my hair very short. I know that I'm luckier than alot of people with alopecia, because I have just enough hair that I can put in some clip in extensions which cover the great bald spot.

Yet, I've spent 100s of dollars again trying the vitamins, hair creams, etc. So...while I accept it, I keep trying.

I also deal with a number of health issues, such as Reflex Sympathetic Dystrophy and my immune system is not strong.

I wonder if other people with alopecia also have compromised health issues?

Anyway, no,,,I don't think you should give up. Even though I have stopped with the doctors years ago, I still am at least trying to keep the little I have.

Comment by Debbi Fuller on July 17, 2013 at 8:18pm

I don't believe it is 'giving up' when there really isn't anything more you can do. Your other issues are also autoimmune problems and the alopecia is just one more of them. Since there is currently (and not in the near future) a CURE, you need to focus on your life. Make every day count and live your life to the absolute fullest. Your hair seems like it is hugely important at this point in your life, but trust me, it really isn't. The really important things in your life are the ones you love and how you impact their lives. You can be an example to them and to everyone you know by your strength and your acceptance of the things you cannot change. It's not giving up, it's learning to accept the hand you've been dealt. We all do that to one degree or another. Having the grace to live your live WELL is the most important thing. I also agree with Margaret Brennan that having (buying) great hair helps. Yes, a certain amount of vanity is in our nature and we don't deny it!

Comment by Katie331 on July 17, 2013 at 8:57pm

Kim -- I can totally relate to this. I'm 31 and have had alopecia for the past 4 years. I have had small patches here and there on my head and lost my eyelashes and eyebrows 2 years ago. I got permanent make-up for eyebrows and eyeline and rarely think about them -- it was so freeing. But now big patches on head are connecting and I cannot style my hair in a way that doesn't show a very thin or bald spot. Theis is very hard mentally/emotionally. I keep reminding myself that I'm not dying, I'm not in pain (generally -- scalp is uncomfortable from treatments), I'm not in jail, etc -- but it's still tough. Some days are good, some are not as good. I do accept it but I'm not ready to give up. I'm really having a hard time coming to grips with the face I might be bald...no, that I likely will become bald. That's really hard to accept. So many people on this site are so encouraging and inspirational with their stories of dealing with this disease, but that doesn't suddenly make everything perfect and sunshine when I look in the mirror or scratch an itch and encounter an empty bald spot.
So while it's really comforting to read of others feeling the same way, I wish none of us were dealing with this confusing, frustrating and really really annoying disease. Thanks to those who share their stories. What a journey.

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