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Opening up to family only made it worse!
Hi all..i've been getting my support from reading all of your comments,ideas and i need to ask you this. i was diagnosed with AA in february after my daughter found a spot and a week later i found another. since then i've been getting shots, taking vitamins, using Toppik to cover up and my hair is still falling out, super thin on top and although hair growing on original spots, the spots spread and its a never ending!i don't want to be around people and try to be sure when talking to people i know that i'm not in direct sunlight or that they are standing behind me! i'm very petite so now the spots on top of my head are more obvious. i revealed to very few in the family and they have managed to either avoid me while breezily saying "pls let us know if u need something" those who counted on me to listen at all hours as they talked re:marital problems, work worries,etc have no time for me now. others have said "i can imagine how hard it is for u knowing how u are" ??!!!"should be happy its not cancer" "that's not as bad as my having XYZ..." my husband tells me "i support you" but after 6 months of finding my first spot, he has yet to even look up the definition of AA or the reasons i react how i do and why i'm just not the same anymore. i try to stay positive for my two daughters so as not to scare them if they see me cry, today my 8 yr old daughter showed me the videos she was looking at to "help" me called "how to grow your hair in a week!" i'm devastated that she's that worried about me instead of looking at music videos on her tablet! the girls move my hair around when i'm in public and my spots start to show.i feel so,so, so ALONE!
Replies to This Discussion
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Permalink Reply by perrywinkle on
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John and Pat, That's so good to hear. After my 'verdict' at the dermatiologist/tricologist, my husband came to very sudden acceptance. He'd married a girl with thick hair, nearly down to her knees, and wound up with a baldie! I wonder if AA/AU is harder on the people around us? (Who desperately want to change it, but can not).
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john and pat, 19 years dealing with this??!! we have alot to learn from you. thank you for your support. i would really really appreciate your views on working together as a couple to get through it.
garden girl, he isn't a bad husband by any means. you are right, i think i have a husband at a loss on how to help or how not to goof this up since i've become such an emotional wreck
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Permalink Reply by Samantha Rockwell on
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My son will be 13 on Friday and he was diagnosed this past May. He has up to 9 bald spots now - small spots are coming together to make one and his hair is overall thinning. The worst comments I have gotten are, "At least he is a boy, he can pull it off." And, "At least he doesn't have cancer." Then there is the comment, "It is only hair." I hate that one!!! I think people mean well, but these comments just reassure me that they have no clue what my son is going through. It is something that can make you feel alone, my son asks me all the time why is he the only one with AA? I tell him he is not, but in his world he is. I understand your frustrations. If you would like to add me as a friend, please do and I will talk to you about it. I am living it with my child and I know how AA can affect you physically as well as emotionally!
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Permalink Reply by Norm on
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Hi, D4E - I think it's often the case that, when something life-changing (in a bad way) is happening to someone, those closest to them just don't know how to react. They feel they have to say or do SOMETHING - otherwise, in their own eyes, what sort of a person are they? That's when you get the "it's only hair"-type platitudes, but they really are said with the best of intentions.
Maybe in your husband's case, he's thought this through and is trying to tell you something by deliberately saying or doing very little - and what that is, is that he doesn't see you any differently to the way you were! He loves you just the same now as he always did, and doesn't care what happens to your hair. And in fact, what can he do to make a difference? If he started fussing all over you, you'd probably find it cloying after a while, maybe even patronising, and then you'd hate THAT.
I've seen how it can end up being the person who's suffering who has to be strong for others. Maybe you can sit down with The Hubster and have a real heart-to-heart about how it's affecting him? You never know, you might be surprised by what you discover!
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hi norm, i understand that its always easier to say nothing when you're not sure exactly what to say, especially with husbands who sometimes have to guess what exactly the right thing to say is on any given day.when i'm processing my gamut of emotions i just want to lean on him and let him do some of my worrying for me even if he doesn't have the answers. when i complain about my hair, he will tell me that it will be ok, nothing i can do about it, if i have to get a wig so be it, he will still be there for me. i see the research he does for his master's studies, his private business and consulting services so its frustrating that something so devastating to me doesn't warrant one teeny search of even a definition of AA let alone all else related to it. i hadn't thought to ask him how he felt..too wrapped up in me i guess so touche... point taken and its fair. i will do that..thanx norm!! ;o) you guys are all fantastic!!
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Permalink Reply by Tallgirl on
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Question: How much time do you spend supporting HIM and his research, study time, consulting?
One thing to try for a busy person: Leave out printed copies of alopecia info in a place where he will sit down with a cup of coffee. In fact, leave the cup, instant gourmet coffee and a plate of snacks next to the print-outs (informative, positive, addressing emotions and ways to make an alopecian smile). You do not even have to be in the room. Also include on his dessert plate an acknowledgment of all his hard work. Maybe a nice example of support will catch on. After a week, if he says nothing, you may have to just go to a support group near you for the alopecia support (see www.naaf.org) or read more stuff on AW. You don't ever want to make a busy person say, "What...and now this, too?" if overwhelmed. Sometimes, also, an overwhelmed person wants to know HE (or she) is okay.
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yes tallgirl, we both work from home so i'm the one he comes to bounce off ideas, gripe about coworkers and all the regular banter you'd do in any office setting. we work for different companies. i may not have an accurate analysis on my level of support for his endeavors but i do make time for him, proofreading important papers correspondence, keepin the kids quiet and out of his way when he's not "in the mood" for their giggles/games, etc. printouts are a good idea... Lord knows there is so much info to filter through online about AA, it overwhelms me and i've worked in a medical field for over 25 years!
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Go see what I put on my profile page and in Discussions: Research for the latest articles, and what NAAF puts out.
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thank you!! will do!!
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Permalink Reply by Margaret H Baker on
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Hey DANCE4EVER!
First of all I want to commend you for reaching out because tapping into support through AW and other means is the first step towards regaining control and one's sense of self. In terms of the family, it has taken me a long time to realize that they go through their own emotional journey (denial, rejection, fear, helplessness, etc...) which is NOT to say that your emotions are not valid! They most certainly are! And I think those close to us often think their sympathy is helpful but truthfully, no one other than us knows what it's like to spend a day in our follicles. YOU ARE BRAVE AND STRONG, and have a WORLD (literally) of people who understand you here, so PLEASE DON'T FRET. WE HAVE ALL BEEN THERE. If you feel like talking about your emotional experience and need to vent, please don't hesitate to reach out to me and others! Also, I am currently working on a project, should you wish to be interviewed (anonymously) down the line. You can read more about the project by visiting www.womenbehavingbaldly.com . And in the mean time, keep that head high, and know that it's one of MANY! HUGS!!!!
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Permalink Reply by Christine on
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I do know how you feel. I've experienced the same thing, my husband will even get angry if I bring it up "too much" stating "Do you have to talk about it all the time?" It is only compounding the struggles we are going through. I'm so sorry that this is happening to you, I have gotten the same brush off comments from friends and family, I think most of us have heard "It's just hair" or we are offered advice that is more frustrating, like how about getting a weave? I know that most people don't even know what AA is or, if it more than likely won't happen to them ever, why think about it. I have been so blessed by this site, and all the wonderful people on here. I'm at a place where I am losing so much and having trouble hiding it too, I'm thinking about doing the big shave here pretty soon. And have pretty much shamed my husband into going to a consult with me this next week. When he found out that my brother-in-law would take me, he pretty much felt like he had to take me, so he would not look like a big Meany. You are not alone!!! We are all right here with you. If you ever want to just talk you can PM me.
Christine
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Oh. My. Gosh. Christine, you just made me remember something. About 6 months before my hair started falling out for good, my non-supportive husband and I had troubles, especially one particular weekend after an anniversary when he drank too much, acted up, and I had to take the kids away until he promised to go to counseling. I came back by Sunday, but he never went to the 11 counseling sessions; I went alone. By the next January all my head hair was gone, by June, all body hair. I used to think just the rude Mother-In-Law experience that November made the hair start coming out in brushloads, but now I wonder if it hadn't started earlier from the shock of his May behavior. They say stress can trigger AA, and I had had full regrowth for about 15 years...then, SWISH! Gone again, even more than in my youth.
I wonder if these men do not like attention taken off themselves, or do not like to discuss feelings, or do not want to admit to themselves that their women may not appear as they were during dating and wedding times anymore, nevermore?
This same ex tried to pretend in front of the San Francisco Support Group that he cared, when he was just shown up by their GENUINE care at a SF event. Such a laugh. Not.
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