New to the loss perspective

Discussion in 'You've Got My Support' started by thinhair1, May 12, 2011.

  1. thinhair1

    thinhair1 New Member

    First of all, hello to all and thank you for participating in this conversation. I'm so grateful to the creator of this site. I can feel the connectedness of the people who post and read here. Community and conversation makes a huge difference in this silly hair-loss thing we're all working through.

    I noticed my hair loss when I was around 31. No doubt it had been going on for some time before that, but that's when I noticed. Once I was out of the denial stage, it just felt surreal, and I was devastated. Ironically, before I noticed my own hair loss I noticed that my older sister's hair was not as thick as it used to be. It makes me chuckle now to think that SHE had a hair problem and I didn't! Shortly thereafter, my hair loss became much more evident, and now 13 years later I'm the one with the hair loss issue. She has less hair than she used to, but does not have a "thinning problem" like I do. Go figure.

    It's interesting that I didn't predict this for myself. My mother has very thin hair all over and has as long as I can remember. Her mother also had very very thin hair. I guess that's the power of denial. Somehow it never occurred to me that it would happen to me, maybe because I've always had ridiculously dense hair (fine and flyaway, but dense). It's extra "funny" because I'm a physician, and something about hair. But I'm also human, and I guess I just didn't want to "go there" as far as considering I could lose enough hair that others would notice.

    There's little that I can report about my reaction that has not already been written on this site. All the stages of grief were exactly that. I spent countless hours collapsed on the floor of the bathroom, weeping and feeling my life was over. It really was surreal..... I knew I didn't have a fatal disease, but it felt like my life was done anyway. And for that I felt like an ungrateful baby. I felt guilty and weak. I was single and felt it would be impossible to meet a man.

    My smile was gone. The light in my eyes disappeared. I look back now and realize I was clinically depressed. I withdrew, I did all the avoidance tactics I've heard about on this site. Every one of them. It's interesting to me how separately, we all instinctively use the same strategies to try to hide our hair loss to ourselves and others.

    I told very very few people. I'm such a private person and so, so very focused on looking like I have it "all together". I was so uncomfortable with being seen as imperfect and vulnerable. My sister looked at my hair and said "you have male-pattern baldness". Not a great choice of words, but she was empathetic. However, she told me I was "obsessed" with my hair loss. Yes I am, I thought. And I felt she would be too if this were happening to her.

    I resented all people with good hair. Why me?

    I went to a wonderful derm (after going to a bad one) named Claire Haycox. She has great hair and specializes in hair loss. She examined my scalp and told me she was sure it was adrogenic alopecia. She let me cry and wail in her office and just empathized. "Who will marry me?" I wailed. Gosh, she was patient and sweet. She recommended the usual Rogaine and iron supps. She was nice enough to offer propecia even though at that time doctors were very wary of giving that to any woman. I did Rogaine for a while but hated it.

    I got hair transplants and they worked well. I have great donor hair in the back. Problem is that I still wasn't happy with the density. It's hard to achieve female-type density with transplants I think. I did Hair Club and had to shave the top of my head. Poor-quality hair that matted and tangled but at least I had hair!

    Four years ago I switched to a topper, and I really love it. It has GIVEN ME MY LIFE BACK! My sparkle is back, and I'm ME AGAIN!! I really don't think about my hair loss much now. I'm so grateful for this. It's taken 4 years of topper experience to learn a lot about them and I've had some bad ones. I've finally come to the conclusion I need European hair to feel happy. It's expensive. I used to go to a woman who imported hair from Europe and she would find hair that matched mine and then send the hair to China to a factory she knew that would custom-make the hair. This took at least 4 months and cost $1200 for the topper. But it lasts about a year and I figure $100 is cheap considering all the money I used to spend on other stuff (and Hair Club was almost 3K a year and I hated the hair!)

    Meanwhile, while using Hair Club hair I met a wonderful man who I married and we have 2 great kids. I'm so lucky! This experience has changed me in good ways:
    1. I'm more willing to be vulnerable
    2 I'm a more empathic person
    3. I really "get it" that people deal with situations in their own way, and there is no right or wrong way to deal with life's stressors. I do believe there are more life-affirming and non-life-affirming ways to deal with stressors
    4. I tend to be a glass-half-empty type of person. I realize much of that is a choice and that I can choose to be happy

    I have some learning to do. My goal is to start handling life's hurdles with some grace and courage. Someone on this forum said something like "I just wish for once I could handle something hard without falling apart". I too aspire to that. I've decided that if I ever lose so much hair that I can't clip on my topper, I will write a long email to my friends and family and reveal to them my long journey with hairloss, ask for their support, and let them know I'm shaving my head and buying a full wig. I'd let them know that when they see me I'll be wearing a wig, unless I'm going swimming, and then they will see me bald or bald with a bandana. And I know they'll be fine with it.

    As of now, I still hide my hair problem and only let a very very few people in my life know. Heck, my little kids don't even know because I'm afraid they'll blab! I feel 99% free......when I can stop being ashamed of my condition and finally be honest about it all, I'll regain that 1%.

    This experience has forced me to choose life or death. It really felt that literal to me. I'm pleased to say I chose life. LIVING IT OUT LOUD is my next goal! Thank you to all you beautiful and courageous women. Please please don't let your light dim. When is the right time to "wear hair"? I believe the answer to that is: whenever you're spending time fussing in the mirror and feeling sad. A minute wasted there is a minute wasted of your beautiful life. I wish I'd just gotten hair much earlier. I'll never regain those hours of lying on the floor in the bathroom wailing.

    Love to you all. It really does get better as you get older, and I hope you seize the day!!!!
  2. Luc30

    Luc30 New Member

    Amazing story! Thank you!

    Not that I want to make you extra stressed out or anything (you've gone through a lot), but I noticed you said you are a physician. Is it possible that maybe you'd want to take a path where you educate physicians on how to deal with women and hair loss on an emotional level? The reason I say this is that you were lucky that you had a dermatologist who was patient and kind.

    So many women here get the "get over it" or "it's not that bad" or complete avoidance of the issue altogether (myself included). I have wasted more money bouncing from unkind doctor to unkind doctor, than I have spent in actual treatments! I think if you're a physician, you could advocate kindness with this issue. You have a voice most people don't.

    It's just a suggestion! :)
  3. thinhair1

    thinhair1 New Member

    Thanks! Great idea!

    Hi Luc30,

    Thanks so much for the reply. I appreciate your insights. I'm especially interested in your comment because lately, after all these many years of hair loss, I'm finally thinking of doing something in the community in regards to hair loss.

    I've thought of doing some speaking on the subject (to physicians or others) and even thought of opening a wig shop!

    It's taken me so long to get to this point of relative comfort with my situation to even think of this. It all has to do with my vulnerability, since of course any of these endeavors would involve me being completely open with all the world about my hair loss.

    I'm not there yet, but it's coming!! Thanks for the inspiration.

  4. Archangel

    Archangel New Member

    you are not alone and you have my full support

    dear Thinhair1, and all
    I'm glad you are all here, and I am glad to have found this site. Thank you whomsoever built it. Much needed, for 'the last taboo' re talking about women's hair loss.

    I just joined and anything I could have said, you dear Thinhair1-girl said it better than I could ever say it. Same same same, in so many ways. I'm your senior by 25 years or so, age 66. Have been there, done it, most all, except for hair club...but I have my share of 'fright wigs.' lol. I think we should all have a photo page of 'bad wigs.' Like I said, I have my share until I figured out the 'secrets' to density choice, and quality of hair, and thinness of each hair.

    I wear long extensions. Yes, oh horrors, a woman of my age with long hair. A no-no in some minds. So send the hair police. lol. Extensions work fine except they are expensive and tangle, but with care and choosing hair well, they are mostly fine except for the odd batch of 'fright hair' advertised as remy but really being more like 'ridiculous.' lol

    And I think I can assure you that you will have hair when you are older too, to clip whatever hair you like. Though too, there will be more and more and better solutions, I feel sure, in the next 10-20 years too. I know cloning of donor hair is promising re stem cell side research.

    I just wanted to mention that I've been so far down it looked like up to me... about hair. So shocking to have found it thinning and thinning with each early childhood surgery, then later, each shock, each surgery, each illness, each pregnancy, each miscarriage. Each medication. Each loss of an organ. And I suspect early childhood vaccines, also. Back in the 40s and 50s we had NO idea what docs were putting into our young bodies. Nor what cooking in the latest chemical coatings on pots and pans, including aluminum, were going into our immune systems, our growth and repair systems.

    Still. It is a good day to have legs that still work (mostly), ability to think clearly (mostly, lol), having made it through menopause and done the detective work re my body to see what works best hormonally and otherwise, looking still vibrant and at the top of my game (which would sorta be the bottom for some very young 'uns, lol)

    I have no spleen, no thyroid, no ovaries, no tonsils, no adenoids, no uterus, no fallopian tubes, partial loss of intestines. There are so many reasons for hair loss, it isnt either /or. It's and /and. I cant say it wasnt rough. But, I will say that each person is different, each body is different, but I believe we share the same kind of soul, that our souls do have compassion for our sufferings about loss of anything, including what I was raised to believe was 'a woman's crowning glory', her hair. I especially care about those who are younger and who are still struggling with this, as I know it causes sorrow, and sometimes too, shame and fear.

    I will only say this for now: I've three daughters. Each has and is making her peace. In a culture that untruthfully teaches us we MUST be a certain way in order to be loved, I support all the daughters, no matter whose, to trailblaze and make their own ways. To insist on it, in full dress, and not cringing. Any person who would demean or find without value a woman (or a man) because of hair, or skin, or anything or any condition we are born with, is not a choice person to begin with. Gladly pass on by.

    It's true, it's a pain in the everything to put on this and that, to spray, water, fluff, adhere, pat, pull, rake, hoe, plant, mow, all the things we would normally do to a garden...but tell you the truth, that's how I see it: an art I'm engaged in. I wont spend kazillion hours at it. In fact my routine is put on mascara, liner and gloss in under a minute. Without looking in the mirror. Extensions tied usually to the left, over shoulder, tied with pretty ribbon. I'm ready.

    Thanks again for your good words. And andele, going forward now. Have to. No other choice for new life, really. Different things for different peeps. For me, art challenge. Or gardening challenge, take your pick. lol. I hope you are laughing with me.
    thinhair1 likes this.
  5. Hair-comeback

    Hair-comeback New Member

    topper advice please


    Thanks for your story- so similar to mine and many others. I just ordered my first topper (I refer to the topper as "extensions" to make it easier for me to think/talk about for now) and am set to have it styled/thinned out next week. I wondered if you could send me any tips or advice as you mentioned it took a few years to get it right. I ordered a human hair (processed) topper to go with my naturally blonde thin hair. I'd really appreciate any advice you could offer, as it seems that you have already figured this out :eek:
  6. Jerseygirl

    Jerseygirl New Member

    Thanks for your story. I also wear toppers made with EHH. Just curious where you get yours from?
  7. thinhair1

    thinhair1 New Member

    I'm sorry it's taken me 4 years to get back to you all. Thank you for sharing your stories and questions. I just posted about where I get my toppers. Lori's Wigsite. They're great. The toppers last me 2-3 years each and I'm pretty hard on them. Also for those seeking a good derm who knows her stuff I noticed that Dr. Claire Haycox is still in Sequim Washington but she's planning to retire very soon and move back to England. So, although it's far for many of you it could possibly be worth a trip out to see her this summer (summer is gorgeous on the Olympic Peninsula where she works). At least you'll get a diagnosis with her... no messing around. She specializes in this issue. Then you can move on from there. I notice she has a few Physician Assistants working with her for the past decade or so and I'll bet anything she's trained them up well, so maybe they're as good at it as she is by now. She's quite special and unusual and I am blessed that I live in Seattle so happened upon her in my absolute darkest hour.
  8. thinhair1

    thinhair1 New Member

    Thank you for your kind words. You're an inspiration!!! xo