| Julie has left some incredibly wonderful, helpful, heartfelt comments on this blog and now she is sharing her story. Here it is: |
For 10 long and arduous years, I’ve suffered from female pattern baldness. At 17, the pain of looking at myself in the mirror caused major depression and my health continued on a downward spiral. My gynecologist prescribed some birth control to regulate my periods and my acne, but the condition worsened. Soon, I was also put on anti-depressants, because I got depressed from the acne and hair loss…then, I couldn’t sleep at night because of the medication that I had to take for my hair loss and acne, and the depression because of my hair loss and acne! Phew! breath…so you see! After 10 years of tests and the determination I had in figuring out my problem, I figured the problem was bad practice of medicine. Well, 10 years ago is different and 10 years from now, answers will be different.
Working in retail with spotlights gleaming on my shiny scalp resulted in stares and inspections from nosy customers. No one understood the shock and devastation of losing clumps of hair. My self-esteem and confidence hit an all time low when after ten years of experimenting with a wide variety of solutions failed to provide the most security and comfort. I wore tight, sweat-inducing, smelly wigs that heightened my paranoia, living in the windy city; the elements became my worst enemy. Wearing wigs and pieces hindered my normal active lifestyle of working out, swimming, and simply just dating! You can’t completely feel comfortable knowing that you might be the victim of shame and embarrassment, or judged by appearance. Image mattered to me, hair made me feel more complete as a girl blossoming to womanhood; soon it eventually challenged and shattered my broadcasting dreams. Suddenly, the holidays just felt lonelier, and so did I with my hair
loss.
I realized I had spent enough time and money wearing wigs, pieces and millions of over-promising, under-delivering solutions that seemed too noticeable. I needed a better explanation but I knew it wasn’t out there. I eventually just got used to wearing the wigs and when I’m financially secure enough to bond something on my scalp, I will. Until then, I’m having fun trying different styles, achieving looks I never would have with my own hair. I use different barrettes and styles all the time so I don’t get bored with it…if you need any advice or tips/suggestions or just someone to talk to, i’m here…YOU ARE NOT ALONE!
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I encourage other women to also share their story, it feels good to put your story out there and have it be read by other women (you can read my story here) who are experiencing the same thing. We can all learn a lot from each other, it so much more than just finding treatments that work, we can learn how to be strong, how others have dealt with their hair loss situation and hopefully become better for it. If you want to email you story, send it to: women@womenshairlossproject.com
September 13th, 2007 at 8:45 pm
Thanks for sharing Julie! … I completely know what you mean … I hate going to dinner and sitting under the bright spot lights … it just makes me wanna cry!
I started loosing my hair when I was 17 - 13 years later its ups and downs between medications and topical treatments. Right now, I just met a nice guy - its a long distance thing, and we’re supposed to see each other next month - the trouble is … my hair - another its the worse its been in years … I had to come off the Pill for medical reasons and the last 2 months has been fall out city! … hair loss sucks!
September 13th, 2007 at 10:34 pm
I’ve never met you but I instantly know how you feel, the lights… being judged, letting go of dreams once had when we had all our hair, only to be left with the faint memory of what it used to be like to wash your hair, comb it and not have more than a couple hairs come out, if that. I don’t think I ever use to see ANY hair. I always think of that line “you don’t know what you got til it’s gone.” No truer words ever spoken. I took my hair for granted as women with full heads of hair do today.
You seem like you are doing really well now, so I applaud you for having the ability to stand tall and face this affliction with dignity and courage.
And yes KJ.. Hair loss does suck!
September 14th, 2007 at 12:04 pm
KJ and Jaz, you are the reason why I have courage, because I know I’m not alone and that my story and advice will benefit somehow. Yes, Hair loss does suck, but you know what KJ, I haven’t dated in years and I APPLAUD you for meeting someone special. I hope he knows how wonderful a person you are and appreciates every strand on your head!
Jaz, its that sense of relatedness, where even though we don’t know each other we still feel pain the same way. I love Joni Mitchell and yes, you don’t know what you have until its gone. I never really knew what it meant to take something for granted until I lost hair. Sometimes I feel that’s the reason why it is gone, maybe it was a wake-up call to make me learn to appreciate my other attributes. And I have…I take better care of myself now.
You know how we get up and get dressed in the morning, we check a ton of things like our make-up, teeth and matching socks or no noticeable stains on our favorite top…I miss doing something to my own hair. Now that I wear a wig, I have that feeling again and its awesome. KJ, if you are meeting this guy, do what makes you feel comfortable and be yourself… show off your inner beauty and hair will just look more and more like the dead protein it is. Good luck on meeting him, I wish you nothing but the best fortune.
September 14th, 2007 at 12:25 pm
Hey KJ -
So if I am read your comment right, you are also a victim of birth control pill hair loss. I am so sorry that you too have to go through this. It seems so needless for women to have to be afflicted with hair loss from the pill, if only there was more education about that. The gynecologist should tell us that hair loss is a side effect of either going on or coming off them. A simple “hey birth control pills may cause hair loss, are you sure you want to take them” would have saved me years of agony. At the same time, had I not gone through this I wouldn’t have met so many other wonderful women who are just visions of strength and true beauty.
My hair loss is also the worst it’s been in years. Lately I’m been thinking that the extreme increase in hair shedding may be due to my taking of the Synthroid medication for my thyroid. But it all started with birth control pills, a couple months after I stopped taking them my nightmare began… That was 8 years ago and what seems like a million hair lost since.
I’m happy you’ve found someone you’ve connected with, even long distance. I’m excited for you meeting him in person. I’d love for you to keep me updated with how it goes.
Jaz - You really never know what you have til its gone. I remember a long time ago before the hair loss, I used to go to the grocery store and see shampoo that said “volumizing” or “extra body” and I would think to myself, who would want that, if I had any more volume in my hair it would be “It” from the Adams family or be sporting one of those disco 70’s wigs that is just a big mountain of hair. That is how little I knew about what was happening around me. Live an learn I guess. I am much more sensitive and compassionate towards everyone, I understand people more, I understand insecurity. So maybe in some ways I’m better as a person because of my hair loss, but I just wish I could move on and take with me this new found knowledge and perspective, get past this and get my hair back already!
September 14th, 2007 at 12:44 pm
You know I think my hair loss was from Birth control…
When I first started getting my awful monthly visitor, I would have it for weeks straight, sometimes the entire month. My Gyne suggested I start using BC pills as I was 17 and may not have children because of my hormones. I used Ortho tri-cyclen and it made me worse…I started breaking out with horrible acne, my hair started to shed and I gained so much weight. All from a little pill. When I begged my insurance company to cover my “cranial prosthesis” prescription, they denied, denied, denied. Isn’t it ironic how that works, its the drugs they cover that cause this mess yet they offer no solutions! What a world we live in where even drug companies implement immature and unprofessional practices.
I hate how helpless and victimized I feel at times…when you have struggles you feel the whole world is against you. Its life’s little blessings that truly uplift your soul and connect you with beautiful people…I am so happy for this website.
September 22nd, 2007 at 5:55 pm
I started losing my hair when I was 15. What’s funny is they initially told me that I was brushing and blowdrying my hair too much. Then I went to a dermatologist and was in there for 5 min. for her to tell me that I had male pattern baldness and to use rogaine. I even had a doctor tell me that everybody had something to deal with- and that was just mine. Thanks! I just recently had a doctor (out of the many I have seen) take interest in me and help me. My testosterone levels are out the roof. I’m now on spiro and hoping for a difference. I often think sometimes I was not grateful enough for what I had. Maybe this is just punishment. I’m a teacher and it’s hard when everybody is busy looking at your scalp and not your face. The students never say anything- but I know in their heart they are praying that this doesn’t happen to them. I hope it doesn’t happen to them either. My mom and I talked about how it will be great when my hair starts to come back and my acne goes away, etc… Well, 13 years later we still have that same conversation. I was just thinking tonight- I wonder if we will be having that converstation 13 years from now. I just want to be normal. I just found this site. Thanks for your comments. At least someone knows how it feels.
September 23rd, 2007 at 2:33 pm
Hi Amy. Welcome to the site! I know what you mean when you say “I often think sometimes I was not grateful enough for what I had. Maybe this is just punishment.” I always took my hair for granted and was so oblivious to what was going on around me. I remember I was once at a hair salon (way before i started losing my hair) and I got this really cute short hair cut and all the ladies at the salon were giving me so many compliments on my hair and how they wish they would have a cut like that. I remember thinking to myself, why don’t they just go see Claudio (the guy who did my hair ) How silly is that, on a number of a levels. But I had so much hair I never really paid attention to other people’s. I actually would have my hair thinned out because it was so thick and heavy. It’s definitely a lesson to really appreciate what we have today.
I am so glad you have found a doctor you like and who is working with you on treating your hair loss. How did you find him/her? Does you mom have any hair loss? I can imagine how hard it is being a teacher and having hair loss, I feel self conscious just going to the supermarket. I call it “speed shopping” I quickly push the cart down the isle grabbing things off the shelves as quickly as possible. I try to be in and out in under 15 minutes. More recently I’ve been thinking about just shaving my head or getting a “topper.” I’ve never actually seen it on a person, but from what I’ve been reading on the internet it seems really neat, it attaches to your head with clips. Have you thought about something like that (the topper) for adding hair to make yourself feel more comfortable while you are teaching?
September 23rd, 2007 at 4:37 pm
Hey,
I found the doctor by accident. My best friend works for him and goes to him for weight loss. I inquired about it and SHE made an appointment for me and made me go. Yeah, I’m a little irritated with doctors because of the many years of them making me feel like it was nothing. It was strange because I went in about help with weight loss and the first 5 min. I was in there he asked me if I had hormone problems. I told him that I didn’t know. He was immediately concerned about my hair loss and ordered several tests. I’m still waiting for some results. I feel retarded now, but I cried when he began to talk to me about it. I thought, “finally, someone who isn’t just brushing me off.” He also wants to do that hair surgery. But I recently read in the book The Hormonally Vulnerable Woman by Dr. Geoffrey Redmond that this is beneficial for men but not for women. In some cases makes it worse. I also read this on the American Hair Loss Association website. I don’t think I’ll be doing that- which was a little disappointing when I found out.
My mother does suffer from hair loss, but only occured when she went through menopause. Her hair became thin but she does not continually lose it. Do you not know why you have hair loss? Is it also because your hormones are too high? Have you had that tested? If you have- I must tell you that for years they told me my hormones were fine. After much research and Dr. Solomon- I found out that hormones are different considering which phase you are in with your period AND that the lab tests “normal” numbers are incorrect. Dr. Redmond supports this also in his book and website. I’m taking spironolactone to block the high testosterone levels. I read that it takes months to see results. I haven’t heard of anybody that has taken it and seen benefits. I have not heard of the “topper” but will look into it. I try to keep my hair layered because when it is long it seems to part more and show my scalp.
September 23rd, 2007 at 5:13 pm
What doctor wanted to do hair surgery (hair transplant) on you? Women are very very rarely candidates for hair transplant surgery because of the diffuse pattern of hair loss. When you have female pattern baldness with diffuse thinning it means any hair on your head could possibly fall out which is why women shouldn’t have transplants. Men are a totally different story, for most men that have hair loss the hair at the back of their heads usually remain intact no matter how much hair they lose, so they are able to take the hair from the back of the head and move it to the front or top and that transplanted hair will most likely remain there if the hair transplant is successful. For women though, any hair moved could just fall out, most women (myself included) have a very unstable type of hair loss. I think women that can be candidates are those that actually have a hair loss pattern that exhibits itself just like a man or if a woman has no genetic hair loss but lost some hair on the hairline or temples from plastic surgery. Be very careful of someone trying to sell you on a hair transplant.
Regarding what caused my hair loss… it was from stopping the birth control pill 8 years ago. You can read my story here. My mom also has hair loss, but only since menopause and not a day before. I had all my hormones tested a couple times and everything came back “within normal range” not very helpful since obviously SOMETHING is happening. I recently have been thinking that it is all being more exacerbated by taking the drug Synthroid to treat my hyopthyroidism. I’m will be going to a couple doctors in the upcoming weeks to look into switching to the natural thyroid Armour.
I read Dr. Redmond’s book and I also visited his clinic in New York. He put me on Orthotricyclen and Aldactone (100mg to start and eventually I increased to 200mg) to treat my hair loss. I am going to try and gather some pictures and stuff about the “topper” and do a post on that topic. It is all very new to myself as well, I just started reading more about it, but it looks like a very good possible solution to cover my thinning hair.
September 24th, 2007 at 1:41 pm
Amy,
I also went through so many tests and got that brushed off feeling from the many doctors I visited. There’s no outstanding evidence in these tests that will reveal hair loss. There are so many factors in it! The transplant does not have a high success rate for women. I met with someone that spent thousands, after 3 months, it was all gone due to “shock loss” an effect of surgery. I think the best way to go initially, just for now until you get more information on other products, is a wig! I’m also on Srinolactone, almost 2 1/2 months now. I will keep you posted on the results…so far, nothing!
In fact, over the weekend I was hanging with my friends downtown Chicago. As I was getting ready, I tried to put my wig on but it kept slipping off. I had the store sew in a couple clips on the temple area to secure the wig to my existing hair…The hair around the clip has fallen off tremendously and I’m scared to death. I managed to secure it, but the slightest bump or gust of wind could possibly move it around a bit. I have never felt so self-conscious! I still had a great time and I enjoyed being around my friends. Wig or no wig, it was exciting to wear a leopard print dress! It didn’t stop the cat-calls!
September 24th, 2007 at 4:44 pm
I’m glad to hear you had a good night out on the town and enjoyed yourself. So are the clips helping your wig to feel more secure and stay in place? How’s the job hunting going?
January 11th, 2008 at 3:05 pm
hi! i found this website while i was searching for alternative hair loss treatments. and when i read your story i felt really close to you. all these years i was examined by so many doctors and none of them said smth certain. i used all kinds of medical stuff: pills, minoxidil etc. and none of them worked. i kept losing my hair. now that i believe that my hair will never be the same, i decided to use a wig or something like that. but i’m worried about the things people will say. i’m sure they will all stare and ask me about my wig, act like i’m an alien. i know that i should thank god cause i’m healthy. there are so many people sick, so many bad diseases and here i am complaining about my hair. but it’s really hard especially for a woman. i can’t do make up like the others cause my skin is very sensitive and i have acne. i can’t do my hair, cause i don’t have very much hair. i act like i have no problem with it and i’m confident. i tell people that i don’t like make up and don’t like to do my hair.. but if i could, i certainly would.
i don’t know why but i don’t see many girls like me here. to tell the truth i saw no one losing hair like me. because of that i always felt that i was the only unlucky one. now that i found this site i feel relieved. sitting uncomfortably under the lights, people on the street or at the shopping mall or patients at the hospital asking me what’s wrong with my hair and telling me what to do and their weird solutions, people looking at my hair when they are talking to me, looking at the mirror and wishing i had hair… i’m really sick of all. and i hate girls complaining about their hair, how it can’t get in shape. i’m sure you all understand how i feel.
i want to find something that looks naturel, and i want to have the courage to use it at school where all the people know me as the less haired girl.
thank you for understanding me.
January 13th, 2008 at 10:01 am
Hi Kate,
It sounds like you have tried a lot Rogaine and others and not had a lot of results. I am in the thinning process but still am able to hid it and Nioxin helped me in the earlier days but not so much any longer. I wonder if you could also find a hair loss support group in your area. I haven’t been able to find one here in Oregon. I heard there is one for Alopecia but not for female pattern hair loss. Did you see a specialist and have a biopsy to determine what is the reason is for hair loss?
I think there is nothing wrong with making an appointment with a professional hair services consultant that can try toppers or wigs on you. Re-member you do not have to purchase one but just trying it on and seeing how it feels may lift your spirit. Also, try wearing different hats of many styles. That will help you get use to wearing something on your head. So when you do transition to a wig the weight of something on your head may help.
My twin (having hair loss issues as well at 33) is an OR nurse so she wears a scrub hat most of the time. She also likes to cycle and wears a helmet. So finding things that you like to do can work and happen for you and for me, wearing a cute hat really helps. I truly believe that getting some sort of exercise each day helps lift my mood and lessens my depression. I hope this helps!
Shanlaree
April 12th, 2008 at 9:05 pm
Oh boy you just saved me about 8 grand! I was considering transplant surgery and after reading all night and finding this website I am convinced my thinning all-over hair would not work for that kind of surgery -yet they were willing to do it! I am 56 and have thin, fine, fragile hair. I tried to wear wigs but as one lady mentioned, where the clips are placed, it causes breakage of my hair and so the wigs are hard to keep on. Any one have trouble with hats being too big? Thats another problem I run into. I can wear little girl-sized hats - like the ones they sell at easter time….sigh. But, thats OK. I just give thanks for today and for the promise of a tomorrow.
Lucky Ellen
April 24th, 2008 at 6:05 am
Finding this site has been a great relief. I am from India and most people around me have thick shiny black hair and I have not found a single girl in my age group having severe hair loss like me. I work in a hospital (I am a dentist) and most of the patients give me weird suggestions that I have to start eating greens more, or questions like did I recently suffer from any serious disease or what not. I used to answer people patiently but soon I found my patience running thin , and I started wondering why do I even have to explain myself to strangers.(I have genetic hair loss. My mom has lost most of her hair but my brother is lucky, he has a head full of hair, but he is not too sympathetic to my condition. Most people in my family except my mom just brush off the topic as if it is nothing especially my dad. They think it will make me feel better but it always makes me feel worse.
The worst part is when my friends discuss hair problems and solutions(mostly about dandruff and hair coloring) I kind of always felt guilty about my hair cos how much ever I tried, I have the feeling that somehow I am responsible for my hair loss and hence felt that I was not maintaining it properly. I usually don’t involve myself in such conversations so that I don’t feel worser than I already do. I hate it when my friends discuss about how unmanageable their hair is( how much I would give for having that much hair!) and discuss relationship problems when I have never had one because of my hair loss.
I am only 23 years old and I find my life quite depressing(I stopped going to swimming ages ago) and I am really scared on what I am going to do with my future. My life seems hopeless and wherever I go people give me a weird look as though I am sort of an alien from Mars. I’ve decided that I am never going to have a girl child. I don’t want her to lead a life of suffering like me. Sometimes I feel like I just have to shave my head and finish the problem once and for all.
May 7th, 2008 at 6:29 pm
I came home today after a day of shopping and I just felt so horrible. I have been suffering from female hairloss since I was 14-15. At the time I thought I was the only girl in the world going through it, because I didn’t see anyone else with thin hair. It was sooo hard, and I went to so many doctors and none of them seemed to help. I just didn’t understand it, cause I used to have so much hair. I became depressed for I would say a year or more, to the point where I would cover any mirrors in the house, so I wouldn’t have to look at myself. Somehow I got myself out of my own misery, and accepted it for a few more years, thinking that I was once and for all going to be able to beat the depression and get over the hairloss. Like so many of you have mentioned, I too know how lucky I am to be healthy and loved, and I know there are a lot of bad things out there. I just don’t know how to help myself anymore, because sometimes I think I am the worst critic of myself. I realized today why I avoid shopping malls. It’s those darned lights in the change rooms…there hideous..horrible, I think I hit depression each time I go. I am so tired of being obsessed with this. I have started to also let go of my dreams and as well I find I am eating to mask the pain. I used to keep in shape and now I have really let go…and that too just makes me so mad at myself. I’ve had very disturbing comments in the past and even now from people, some of them concerned because they don’t realize that girls can lose their hair as well, and some who just can’t stop staring at my scalp. I’ve given up caring about what other people think, but I just wish I could be okay with it myself. I wish I didn’t care! I’ve had urges to shave my head, but I think I will still look funny because patches will start to grow and some patches there will be nothing. I don’t feel like there is any winning. I am sorry if I sound like a winer. But I came home and I felt at the bottom once again, as I do time and again and I decided I would try and see how others cope with this problem and I found this website. I am writing my story because, for the first time I don’t feel so alone and I feel every single pain that all of you have written about. I only wished that this website was around 10 years ago. I just wanted to say that we are all brave and strong women because it’s sooo tough to be a woman and to have thinning hair, and you don’t know how hard it is till it hits you. I pray that we will all find peace and happiness within ourselves to not let it get in the way of our happiness and dreams. Thank you all for sharing your stories.
June 2nd, 2008 at 6:17 pm
As many have said I am so glad to have found this site. This is the first site I have found after searching and searching that makes me feel that I am not alone. It is miserable to have thinning hair. I had such cute hair when I was 16. It wasnt thick or lush, but it was just so much better then it is now and I would love to have it back. I would never complain about it again if only I could have it back! Right now my hair has not thinned horribly. It is all over thinning, and you mostly only see it where my part is and around the crown, its worse in the sun and as others have said in the dressing room! I was diagnosed with telegum effluvium caused by stress and told it would grow back in a year, well it deffinitly hasnt grown back, and has gotten a little thinner if anything, so I think my doc was mistaken. I think I have the same problem as my sister who also has thinnish hair. She wheres a short style and poofs it with a curling iron which hides it pretty well. But that style just doesnt go for me. I think the truth it that we have fine fragile hair in my family and I box died it, and tied it up so much that I damaged my hair all on my own, and im concerned it will never grow back…makes me want to cry sometimes! I hate it, esp since my bf brought it up the other day, he didnt say much, just that he was concerned about it because he didnt want me to have self esteem issues about it, but then he always says he loves me, thats all the confidence I need lol! I love him too and I am blessed to have him in my life…but I cant help but look at other girls when we’re out that have thick beautiful hair and think wow, he could totally drop me and go for that pretty girl…kinda gets me down. But see I only have confidence issues when I want to. I go out in the sun or in a resturaunt and cross my fingers like crazy that my balness isnt showing, when deep down I know it probably is, but then I say to my self…what am I doing? I am wasting precious beautiful life worrying about my hair! At 20 years old I only have, if im lucky 50 or so years to go in this life, and I dont want to throw any more days away hiding from the world. I am beautiful on the inside and out, and I feel great about who I am. I take good care of my health with excersize and good eating habits, as well as surrounding my self with possitive people. My hair is not me, this hair and body is merely a shell protecting my spirit and soul, and that is what truelly matters- whats deep down inside. I am thankful for what I have. Things could be so much worse! But I am here to rock the world! And you all are too! Prove to your self and the world that you are worthy and beautiful. Hey maybe thick hair will be a thing of the past. They say nearly 70% of women have hair loss problems at some point in there life! Thats more then the 20% with thick hair right!? Lol. Maybe female pattern baldness will be the new style in a few more years! Any who, good luck all…you are not alone…we are beautiful. Lets not hide from the world…lets pretend we dont even have a problem or a care in the world. Dont slouch down and hide when you walk into a room hoping no one will see you, walk tall and proud, like you didnt even know you have a problem. It really works, people will respond possitively with your confidence. It took me a while, and I still have my days where im like ew! But then I just remember britany spears shaving her head, she was completely bald, and shes a celeb! Everyone still loved her lol.
June 7th, 2008 at 5:29 am
I start to loose my hair since I have my first baby when I was 21 years old, now I am 45. I see Julie’s picture and my hair looks exactly like her. Julie you have a protesis or your hair grow back?
If someone knows if is a support group at Orlando Florida I would appreciate the information. Also if someone could let me know which wig is the best quality to bought I will love to know that info.