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Comment by Julie R on August 24, 2010 at 8:18pm

Dear friends,

I really appreciate your outpour of love and support. I have taken a few days to get myself back together after that terrible breakdown the other night. It was helpful for me to cry it out and vent it out. Sometimes, you just need to let it out as part of the acceptance phase. Anyway, I've been doing some self-reflection and really thinking about why people react the way they do. I know that my mom does love me and is going through her own issues dealing with this too. I'm trying to take control of my life and treat myself well. I splurged on some cute dangly earrings. . . to distract from my hair or lack of hair, haha. I'm also making an appointment for a mani/pedi in an effort to pamper myself. I started going back to my Saturday morning yoga class, and felt wonderful. I made an appointment with a therapist to talk about things. I know that I cannot control this AA, but at least I can stay in control of other things in my life. I'm focusing on my general well-being inside and out.

Your comments have all encouraged me, inspired me, and most of all comforted me. Thank you for relating to me, for reiterating what's really important, and for reminding me to try and understand other people's perspectives. I truly feel so much better about myself right now, but I know that when times get tough, I can turn to you and the rest of the Alopecia World community.

And on an even brighter note, I went swimming for the first time since I've developed AA. I have always loved swimming, but I've been depressed about people potentially seeing my bald spots. I've put off buying a swimcap during my denial phase. However, yesterday, I went to the beach, and went swimming. . . bald spots and all. I was happy to be in the sun and enjoying my life for what it is :)

Comment by Heather on August 22, 2010 at 11:25pm

I soooooo understand, my mom is the SAME way.

Comment by Kate on August 22, 2010 at 12:19pm

In thinking about it a bit more, I want you to know that I completely understand the frustration and sadness you feel trying to communicate your sense of loss and fear to those you want to understand and support you in your time of need. Perhaps you can be proactive and use the opportunities to move the conversation forward and teach your confidants (and yourselves) how to acknowledge your deeper fears and needs. When your mom suggests you should "stay positive and not think about being completely bald" try to gently take the conversation a step further, and acknowledge that part of what you need right now, more than the hope of keeping your hair, is to be allowed to imagine a scenario when you are bald. Explain that part of what you also need is to have others (her) imagine that scenario too. What you want from this exercise is for you both to understand your potential reactions (sadness, mourning, acceptance, etc.), with the hope that it will help you both begin to realize that you can and will be supported and accepted in any scenario. You can let your mom know that you value her listening and you value knowing she wants the best for you, and it gives you a sense of peace and acceptance to know she would give this to your hairless or not. In fact, you might even explain that thinking about the future is a lot like a practice exam or a fire drill. The idea is to do it early, before the emergency, so that if/when the emergency occurs everyone is prepared. :) You never WANT the emergency, but you are darn glad you practiced just in case.

Good luck.

Comment by Kate on August 22, 2010 at 12:11pm

It can be so hard to hear others reactions, either when they say it is "no big deal" or "unnoticeable" or that it is "just hair and stop worrying about it." The worst part is that it feels like the people we are confiding in are not listening to exactly what bothers us. For me, and I gather for most of us, the big fear and pain of loosing hair is in the potential rejections and hurts from being different, more than it is actually about the hair (I for one don't care if I am bald, but I do care if my friends are embarrassed to go out to dinner with me. So my fear is not the hair loss, but the potential for rejection).

As in your mother’s case, I think many of our loved ones are more concerned about healing or addressing the momentary hurt, rather than helping us find long term acceptance. And it’s not because they are mean or bad friends/boyfriends/mothers/etc. It’s because they are upset to see us sad and are reacting impulsively to stop our hurt in the moment. They don't realize their short-term solutions enhance our long term anxiety of rejection.

The consolation I give myself when I face these reactions is to look at my own behavior in similar situations, and know I have resorted to the same tactics without even realizing it: When a friend confides in me about difficulties in a relationship, and I advise her to look for the good qualities in her partner; or when a friend has experienced a loss or death and I tell them that the pain will pass; or when a family member has fallen injured or ill and I tell them how it could be worse... looking back I remember I made all of these types of comments, always with the best of intentions. And now, being on the receiving end, I can see the error of my ways, how my comments did not always address the real concerns or the deeper issues. What this tells me is that we are all of us challenged to find the right words and meaningful demonstrations of support. We are all on a journey to learn how to care for each other. So I try to give my confidants and loved ones some benefit of the doubt, and know that they are growing and learning about the right things to say just as I am too.

As we all know, we need to be gentle and kind to ourselves, especially in times of challenge. In the case of your mother, I hope you can find it in yourself to apply similar kindness and understanding to her, and continue to be open and honest with her so that together you can both find ways to communicate about your feelings. You deserve to be heard and understood. And always know that this community is here for you when others can’t be, yet.

Comment by Pat Latina on August 20, 2010 at 8:29pm

Hi Julie, we met in manhattan for BGDL Bagel. You're a beautiful woman inside and out and no one can take that from you. I felt your pain, I've also been there and some days can't stand looking at my bald head. But this I can say, that the minute I have my pitty party which I give myself permission to do whenever I deem it necessary. I put my fabulous FW on and go about my business. Some days are going to be hard, but you must allow your self to cry, but then you MUST wipe your tears, wash your face, give yourself a BIG hug (I do this often) and keep living. This site has been a life saver for me and you will soon find that this is the place to come to cry, vent, let it out and be encouraged to go on. Can't wait till we meet again.
(((HUGS))) My prayers are with you.
Pat

Comment by E Ski on August 20, 2010 at 12:10pm

When I was going through losing my hair, I was sometimes angry at things my mom said or did. But, little did I know, she was hurting just as much as I was because of how much she loves me. It pains your mom to hear you cry on the phone (not that you shouldn't do it.. she still loves that you're sharing things with her) so her reactions may not be exactly what you had in mind, but they're genuine and she cares for you. Keep that in mind when you get frustrated.
And why you? Because you're strong enough to handle it!

Comment by Tallgirl on August 20, 2010 at 9:16am

Yes. Make it count. We can vow to make some POSITIVE, fun memories with our men, our friends and our families! They may be mourning the loss of positive conversations and times with us!

Comment by Sarah Schripsema on August 20, 2010 at 3:19am

Hi Julie, I so wish I could hug you right now. I understand completely. I had a fiance 4 years ago who developed pancreatic cancer and I sat back through it all with him. Just to have him leave me 2 years later in an impulsive move to texas. I somewhat understand why he did that but like you said it hurts. And my new boyfriend has no compassion whatsoever. There was one day that I just didnt want to get out of bed and I could of really used some encouraging words but all I got was the phrase :i dont have time to console you right now..its just hair so get out of bed. Its unbelievable..and a big part of me wishes that all of us alopecians lived close together in a neighborhood so we could keep eachother company. Especially for those who do not have a great support system.

My mother is in a serious amount of denial right now. She has given me her whole speal on how I'm losing my hair because Im not letting go of the past. I assure you that Im very focused on the present and hope to let go of that (okay so maybe that was bad humor). Hang in there!!

Comment by Tallgirl on August 19, 2010 at 11:59pm

If this is genetic, we did nothing. It was always there, waiting to show up. No fault. We just didn't know it.

Alopecians will understand alopecians best, but not all of us are counselors. Since Alopecia Psychology is not yet a field, you can go to regular professionals but have them not quite get it about our "loss," or stay here with non-pro folk who understand but who don't always get into ALL the individual stuff.

"Sometimes it's hard to discover
That we may be left for another;
But remember, love's a game,
And it can always come again.
So, don't let the sun catch you cryin'." [Really. But, it may take years. It's God's schedule.]

Comment by Marisa on August 19, 2010 at 11:53pm

I know what you mean about the "it could be worse"....I get that all the time too....and I know it could be worse...but sometimes, somedays...this feels like it is the worst!!! I look at some of the people on here and think to well they are at least lucky they have good looking features...and then I start at the top of my bald head and tear myself apart ....from the top of my head to the soles of my feet....AND THAT IS SO DUMB I KNOW...but sometimes I think we all have bad days...and we just have to try and move through them....I PRAY YOU HAVE A BETTER DAY TOMORROW AND THAT YOUR BOYFRIEND WAKES UP AND GIVES YOU THE LOVE AND SUPPORT YOU GAVE HIM....BLESSINGS TO YOU...YOU ARE NOT ALONE...xoxo

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