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.

Views: 14

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 Heather Bloom on August 22, 2010 at 11:25pm
I soooooo understand, my mom is the SAME way.
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 :)

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