Replies to This Discussion

Permalink Reply by Athina on October 8, 2008 at 8:58pm

Hiya
I can fully understand what you're talking about here! Most of my family are pretty accepting to the fact that I have this, and there's no cure, except for my mum - it seems like almost every week she's found some new thing that will just make it all grow back and she can't seem to grasp the fact that I'm not sick.
She is however getting better, and I think she is beginning to understand...well at least I hope she is!!

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Permalink Reply by Reen on October 8, 2008 at 9:14pm

thank GOD someone else understands!!!! I mean, the rest of my family is pretty cool about it. They don't stare at me differently or look at me differently, but my mom is always trying to "fix it" even though she's been with me to the doctor and knows that she can't FIX IT!

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Permalink Reply by Jude on October 9, 2008 at 3:50pm

I have had a similar problem but with my Dad. He is terribly concerned about the alopecia out of love but doesn't understand my way of dealing with it. He thinks the best way to handle it is to cover it up and not tell anyone. He tells me I should wear the wig even at home and goes round closing the curtains if I don't.

I tend to tell people because I find this easier than feeling like I have a shameful secret that could be uncovered at any moment. The other day a friend of my mum's commented on how nice my new hairstyle was (a wig with highlights). He didn't want me to tell her it was a wig - which made me feel worse as I felt I was being deceitful. He has also given me dozens of vitamin pills and herbal remedies - even some aloe vera toothpaste all of which he thinks will help me. I know it's done with the best intentions but annoying nonetheless.

I think people can act in unhelpful ways out of concern - we just need to stand firm and deal with this in the way that is most helpful to us.

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Permalink Reply by Jenn on October 9, 2008 at 4:45pm

be honest with her. my family who are all in different states just ignore it like nothing is happening. no one says a word except that i need a wig. but none of them ask me how i am dealing with it either. i really dont have a family that talks all the time, we see each other a couple of times a year, but we don't talk about things that are going on in our lives. i have never had a mom and my dad is very stand back about everything. my sister is in houston and we are really close, she is the only one that checks up on me. just be honest with your mom she cares about you and that is always a good thing, you are blessed.

frustration - perfectly normal (although what is normal??)

i have had this since about may as well - dont worry we will both get through this!

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Permalink Reply by Reen on October 9, 2008 at 6:38pm

Thanks.

I guess that sometimes i forget that instead of caring too much, she could be completely un-invovled.

She's better tahn she was in May though!

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Permalink Reply by Sarah McIntosh on October 9, 2008 at 6:38pm

For me, it was when I told my family I wasn't going to do treatments anymore.They seem to think because I have no faith in treatments for alopecia that I gave up hope for myself,never mind the fact that I have learned self acceptance and feel that we are just a rare type of people who deal with hair loss.

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Permalink Reply by Hugh Palmer on October 9, 2008 at 11:13pm

I used to be all about searching for all kinds of products which would cure my wife's alopecia and that used to frustrate her also. It took a little while for me to really understand that she was totally comfortable and accepted it and it was not her hair that was the issue it was me. So be patient with your mom and sooner or later she'll come around.

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Permalink Reply by Debbie on October 9, 2008 at 11:18pm

I wish my husband was so accepting. I want to go without my hair, but I know he would be uncomfortable. Who should compromise this time? I think you are an amazing guy not to care either which way.
I know treatments don't help. If they did, everyone would know about them and use them. You are a great support system for her.

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Permalink Reply by BaldGirlsDoLunch.org on October 10, 2008 at 12:52am

Sometimes it's more effective to get where you want to go without trying to go straight from A to Z non stop. Take a more leisurely path if talking directly about hair and wig issues is too emotionally charged and there's too much initial resistance.


What if it was presented as an open-ended dialogue at first...kind of like fact-finding....just to learn more about each other's attitudes. But not to come to any resolution or action. Not to ask or expect any changes in attitude or behaviour. Not yet.

Without going for any solutions, would it work for you if you could get a dialogue going about things you value and things he values so far as personal comforts? Don' t even mention wigs and hair and all that. Does he place a high value on being able to throw open a window when it gets too warm inside? Does he value having an assortment of blankets at all times near the bed, the better to choose which ever feels most comfy on a particular night ? Does he value having his own controller for an electric blanket? Does he value knowing that he has the full range of turtleneck weights in his closet available when the weather gets cool? Does he value owning different kinds of gloves and mittens because some days only a certain style will do? Does he place a high value on having different coats and jackets for different kinds of weather?

This exercise is about being able to understand your own core values, too, because we all have them, we might not be aware of them, and we might not yet appreciate the core values of the people closest to us.

He may not even know the source of what you recognize as discomfort, but together you can work toward understanding where it comes from. That's the first step.

Later on you can talk about expectations surrounding physical appearance, etc. It could be that he has lived his life on a script of critical-ness....where people placed a high and possibly unachievable value on appearance. In some, it's so ingrained they don't even know they have issues about change, appearance, control and perception. There are many possibilities...some people are brought up entirely with a mind set where everything they do is based on the imaginary perceptions "what would the neighbors think."

To achieve peace of mind, it often takes exploring back down to core values and long held beliefs about how each thinks the world is supposed to be.

I also think we end up knowing more about the other person when we listen three times as much as we talk.

thea

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Permalink Reply by Renee on October 9, 2008 at 11:36pm

BE YOU! My 5 year old daughter has AA. I let her hair fall out to the very last strands until the day her daddy decided they would be bald together. It started growing back but now unfortunately it is falling back out. BALD IS BEAUTIFUL. Your mom needs to get over it and accept YOU. I put nothing but postive things in my childs head. My mom on the other hand is pushing me to try all these vitamins and oils and anything, I tell her it is what is is. ENJOY LIFE IT IS TOO SHORT.

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Permalink Reply by BaldGirlsDoLunch.org on October 10, 2008 at 12:21am

Put into words the very thing that your mom is likely feeling. Showing her that you're aware of feelings she has but is not saying will go very far.

In one of those nonchalant moments riding in the car, or just hanging around the kitchen together say in a sort of matter of fact but sincere way " Mom, it sure must be hard to be a parent and see your child going through the kinds of changes I've had with the hairloss."

Don't say anything else. She may or may not respond at that time. It doesn't matter.

That's all you need to do. Leave it go at that and I believe some new openings and communications will come along soon.

Keep us posted.

Thea

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Permalink Reply by Reen on October 10, 2008 at 10:45am

Thanks Thea.

It's been a period of major adjustment for us, even aside from the hairloss. We're reaching a strange point in our relationship, and my alopecia is just adding tension.

Just like I do, she has good days and bad days. She doesn't always know what to say, but I have to give her credit for trying.

Thanks for letting me know that I'm not alone. I guess that's the hardest thing alot of the time, it's lonely.

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