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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 dance4ever on
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thanx andre.. its crappy when people try to make u feel guilty for being upset about losing your hair. with AA the worst is not knowing how bad (or not) its going to get. i often think.. if i knew i'm going to progress to AT/AU, i'll deal with that because i then know what's coming. guessing based on what my hair is doing that day sucks. emotions up and down.. exhausting. AND to boot, these same people get pissed off if i don't show up at parties, picnics, etc..i've been told i'm taking it too far and being too vain.because "we are family you know..."
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I am so grateful when someone says "at least you don't have cancer". That's true, so I give thanks, and keep on going.
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Permalink Reply by Tallgirl on
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No one can see this from the inside out but ourselves. In the meantime, show your strength, practicality and humor to your children so you can model how to handle strife. Any child needs that lesson. Go to joyous places and laugh with them so they do not worry. Look how mature your daughter is...trying to take care of you! Hug her for that, then do some of the silly things with her or let her invite friends over for a cupcake party or dress-up day. Here, and at support groups found through www.naaf.org, or with any family member/friend you designate as THE person to listen (but not endlessly), is the place to let it out. Hubby and kids may be too scared. Yes, you are still you inside...just distracted from yourself by all this. Play Worst Case Scenario with yourself, and write down practical options or lists of goals you can STILL attain at different degrees of hair, from all back to all gone. I'll bet you'll find you can still drive, cook, love, read, cuddle kids, draw, dance...more. (I just had to console a 26-year-old who still needs a strong mom with answers, so I had to hide by own worries about my own unemployment, divorce, lack of meat in the fridge, etc. because THAT'S WHAT A MOM DOES.) Now go do some crazy dancing and paint fingernails with the girls, because you are a team. And if those relatives ask what you need, tell each one something you need: help choosing a wig or hat, haircut, accompaniment to dermatologist office and lunch afterwards, Turkish scarf from online store. If they comment that alopecia is not so bad, direct them to some of those YouTube videos made by teens showing the trips for the shots...that will shut them up. And, you cannot know how bad THEY feel about their XYZ, because that's from THEIR insides out, too. My ex never supported me and ran off with a long-haired, younger secretary...so I am both glad "insensitive he" is gone, but also wonder if my stressing over alopecia was partly to blame.
You are in the right place. Vent here, in a journal, apart from family, for only a self-imposed time limit each day or week, or in the car when alone. This takes a long time to process, and then when it changes, another long time to process THAT step, etc. I've had alopecia since 1963, off and on...and luckily was able to nip the emotional thing in the bud with decent falls and wigs before anything got crazy. No high schoolers figured it out...whew. What can YOU do for yourself, even without asking a family opinion about it? After all...you are The Mom!
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tall girl, you are so right. my "mom" duties are often what get me thru the day because i feel "normal".i've made it a priority to do things for and with them to distract them from what i am feeling inside. ironically the only one that sees through it is my eight yr old. she gives me spontaneous hugs when i'm smiling but my eyes aren't.i do love the idea of calling the family out on their offers with actual requests for help like u suggested. i'm just kind of afraid if they make excuses because its being rejected again by them. the you tube videos?i'm sharing those.didn't know they existed but gonna let them do the talking for me. its so crazy that you mentioned that you suspect your stressing may have alienated your husband because that's exactly what may be happening to us.i may be asking for help from my husband that he doesn't know how to give.i've always been the caregiver at home with all the answers and everything under control. this is the first time i'm at a loss on how to be and deal with this.i'm going to make the list you suggested. it may be what i need to help sort out all the thoughts whirling around in my head as i try to maintain a "normal" face for everybody around me. but i honestly resent having to pretend for anybody's sake other than my daughters. sigh.. thank God for all of you. thank God for you tall girl..
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De nada. By the way...do not miss out on too many things in life you will want to be there to see or experience. Just skip the events or people who are rude, or just walk away from them at the same event and stand with the nice folk. Eventually, people will ask or figure it out. Just say you need to be where you are most comfortable for awhile, even if it is the kitchen, the deck, or by a garden. If THEY want to be YOUR friend/ support, THEY will have to speak gently to you, yes? Quietly handing out a preprinted business card with "See www.naaf.org to figure out what I have happening to me" on it, then walking away, means you don't really HAVE to explain or gripe at family events. You can smile secretly on the way home, imagining their faces as they read up and GET IT.
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Permalink Reply by Garden Girl on
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I don't know him, but am thinking try not to be too hard on your husband. In my experience, a lot of time husbands want to help but are afraid to say or do the wrong thing. Are their some other concrete things he could do to help? Take you to a movie to get your mind off things? Take the girls for a few hours so you could have a little "me" time? My heart goes out to you....
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You are not alone! Hubby possibly doesn't talk about it because he cannot do anything to change it. He doesn't want to upset you more - just give him a cuddle and say "I miss my hair". Mine said "Yes, I know... BUT IT DOES NOT CHANGE WHO YOU ARE!" It was the most useful thing I've heard. Next day I took my scarf off, shaved the remaining 20 hairs and went bald. It was quite liberating... I have nothing to hide. All my friends have been great, the kids at school ask questions and I answer them..., my cubs vote on my beanies, the ladies at the OP shop collect pretty scarves for me, and the girls at high school shaved (for a leukaemia charity) because if I can do it, so can they. People who won't talk, often want to but don't want to upset you. You ring them and propose a lunch date, or a picnic with the kids. You will not be alone if you choose to communicate with someone beyond this forum. Big hug.
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I regret you are feeling so alone. You and your family are in my prayers.
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thank you vesselsong
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Permalink Reply by Erika on
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I am sad to hear that I get those looks were they think I have cancer because I am wearing a wig that looks like a wig and it isn't fun I have been trying to hide it for so long it is like you dig yourself into a hole so no one will know.... wishing you the best
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thank you erika..that's exactly how i feel now. perfectly happy if i can just stay home..no desire at all to go anywhere! i read about the brave folks who have opted to just shave all of their hair to not have deal with the covering up and i admire their courage!
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Permalink Reply by BTB (John) on
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When Pat was first diagnosed I was lost as to how to act, I was too attentive, I was insensitive the whole thing was an emotional roller coaster. Joining this site and chatting to other women and partners helped me to understand more than anything else. what you're feeling emotionally sounds pretty much what wee went through, it's been 19 years and it's better and we don't have any emotional issues over Pats alopecia. We both hate alopecia and would pay any amount for a cure but until then we live with it and are fortunate because of our efforts to work together to not let alopecia ruin our relationship. We are both here if you want any ideas about our dealings with alopecia.
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