Alopecia World
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I wish they could understand
I just got off the phone with my mom and I'm in tears. I'm feeling bloated and weak and tired, possibly due to my oral prednisone treatment. I'm scared and sad. She just kept telling me that I should distract myself and not think about my hair. I told her it's hard not to think about it every day when I look into the mirror. It's hard not to think about it when I run my fingers through the hair I have left and feel the bald spots. I told her that I'm thinking it's very probable that I will eventually lose all my hair. She said I shouldn't think like that and that I should think positively. Honestly, I don't really want to get my hopes up for fear of having them crushed. I want to start accepting that it's a real possibility and that it may be something I'll have to deal with.
My boyfriend and I are on a "break." I hate him for needing his space to figure out his own life right now. I know it's selfish, but I wish he were more supportive during this tough time for me. I have been with him a year, helping him get through his chronic kidney disease. Worrying about him really took its toll on me, but I was by his side through and through. Now that I need him for support, he can't be here for me. His health has improved so much that he's no longer on the transplant list. I'm happy for him, and I just wish he could support me the way I did for him. It hurts so bad. I would think that of all people, he would understand the most how painful of a time this is and how much it would help to have a loved one around.
I feel like I can't cry to my mom because she doesn't really want to acknowledge how bad I feel. She keeps saying "it could be worse." That just makes me feel worse for feeling this way in the first place. Am I supposed to just brush it off because I'm not dying? It's still an autoimmune disease. It's still a piece of my physical self that I'm losing. Can't I mourn a little bit? Can't I be mad at the world for now? I have done everything right my whole entire life. I have never smoked. I never done drugs. I have eaten healthy and exercised. I just wish they could understand that I feel betrayed by the world for this to happen to me. It's so unfair. I sometimes wonder what I did to deserve this.
This blog wasn't meant to be a sob story or to get people to pity me. It's just that I feel like I have no where else to turn to without feeling bad for even mentioning it. I feel so alone, and the only thing that makes me feel a little better is reading everyone else's posts here. We're strangers to each other, yet we share a bond that only we can truly understand and sympathize with. I pray for God to give me strength. I think I'm just going to go to bed now, and hope for a better day.
My boyfriend and I are on a "break." I hate him for needing his space to figure out his own life right now. I know it's selfish, but I wish he were more supportive during this tough time for me. I have been with him a year, helping him get through his chronic kidney disease. Worrying about him really took its toll on me, but I was by his side through and through. Now that I need him for support, he can't be here for me. His health has improved so much that he's no longer on the transplant list. I'm happy for him, and I just wish he could support me the way I did for him. It hurts so bad. I would think that of all people, he would understand the most how painful of a time this is and how much it would help to have a loved one around.
I feel like I can't cry to my mom because she doesn't really want to acknowledge how bad I feel. She keeps saying "it could be worse." That just makes me feel worse for feeling this way in the first place. Am I supposed to just brush it off because I'm not dying? It's still an autoimmune disease. It's still a piece of my physical self that I'm losing. Can't I mourn a little bit? Can't I be mad at the world for now? I have done everything right my whole entire life. I have never smoked. I never done drugs. I have eaten healthy and exercised. I just wish they could understand that I feel betrayed by the world for this to happen to me. It's so unfair. I sometimes wonder what I did to deserve this.
This blog wasn't meant to be a sob story or to get people to pity me. It's just that I feel like I have no where else to turn to without feeling bad for even mentioning it. I feel so alone, and the only thing that makes me feel a little better is reading everyone else's posts here. We're strangers to each other, yet we share a bond that only we can truly understand and sympathize with. I pray for God to give me strength. I think I'm just going to go to bed now, and hope for a better day.
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Comment by Bald and Fabulous AKA Terri on August 19, 2010 at 10:19pm
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big hugs to you, Julie. I have too felt the same way. You are not alone in your feelings. I have many times felt bad for feeling bad about having alopecia....."why me" and knowing that is not the worse that could ever happen to a person. I have found alot of comfort in this site in the short time I have been here. Keep brave.
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Comment by sunstar7 on August 19, 2010 at 10:25pm
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Hugs, Julie! I feel your pain! You DO have a right to mourn!! I know a few people that respond the same way;no sympathy whatsoever!! But the thing is, we all process things differently.. Don't feel bad for feeling the way you do! I'm going through the same thing, and i'm trying to take it one day at a time.... I hope you are able to find that outlet/support that you need.. Praying with you!! :) :(
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Comment by Heather L on August 19, 2010 at 10:41pm
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Julie,
Reading your post just now my eyes filled with tears - both b/c I am sorry for what a tough time you are
having right now and also b/c I can relate so much to how you feel.
I've had AA for quite some time and I find that there are times that I can deal with it pretty well - and other
times that I feel collapsed by the weight of it all.
Keep in mind that prednisone can cause mood/ emotional swings so that could be adding to how you are
feeling right now.
I'm imagine your mother means well - and just simply doesn't know what to say. I really do think for
anyone to understand AA -- they would have to walk in our shoes! Have you thought about talking to
someone else -- a close friend, therapist, or finding a local support group? I have been going to
acupuncture for several months now - unfortunately I don't see it helping with my hair BUT it does wonders
for my anxiety. Sort of feel more centered afterwards. Is that something you might want to try?
Sorry about your boyfriend -- that certainly is unfair! Shame on him. OMG- that's a bad hurt when someone
you love turns out not to be what you thought or needed! Sounds like he has had a tough year - perhaps he
will come around and wake up.... if not I guess when that happens we just have to trust "man's rejection is
God's protection" and move on.
Sending lots of positive thoughts your way! Hope tomorrow is a better day too!
Heather
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Comment by Marisa on August 19, 2010 at 11:53pm
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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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Comment by Tallgirl on August 19, 2010 at 11:59pm
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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.]
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Comment by Sarah Schripsema on August 20, 2010 at 3:19am
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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!!
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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!
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Comment by E Ski on August 20, 2010 at 12:10pm
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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!
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Comment by Pat Latina on August 20, 2010 at 8:29pm
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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
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Comment by Kate on August 22, 2010 at 12:11pm
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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.
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