An agonizing secret: One woman's story of loss
The author before her hair loss began.
July 11th, 2011
07:29 AM ET

An agonizing secret: One woman's story of loss

Editor's note: Lisa O’Neill Hill is the co-owner of a writing, editing and consulting business in Southern California.

My long, thick red hair - the thing I liked most about my looks - began to fall out 5 years ago, when I was 37. I’d perpetually pick hair off my arms, my back, my car seat, my bathroom counter. My shower drain clogged easily. Running the vacuum meant enduring the smell of burning hair.

At first I thought the shedding was temporary and must be connected to a medical problem. I consulted eight doctors, endured dozens of blood tests and spent thousands of dollars. I secretly hoped I had a thyroid problem, a hormone imbalance, some kind of vitamin deficiency, even lupus. I needed an explanation. But all the tests came back negative.

A few years ago, I flew from California to New York to see an endocrinologist who specializes in female hair loss. He diagnosed me with genetic hair loss and prescribed a daily regimen of several medications, including Propecia, a hair loss drug that is only FDA-approved for men.

That doctor gave me hope, but that hope has long since faded. Although his regimen has worked for many, it didn’t for me. I suspect nothing will.

After exhausting my options, I’ve had to face the truth: nothing is going to stop my hair from falling. My father and brother have varying degrees of hair loss and my mother always had fine hair. My maternal aunt had very little hair on the top of her head, classic female pattern baldness.

I’ve never been thrilled with my appearance, but my hair was the one thing I was frequently complimented on. It was an integral part of my identity. When my hair began to shed, my already fragile self-esteem broke apart. I felt ugly, ashamed.

Watching my hair abandon me put me in a dark place. I went to therapy for a year and began taking antidepressants. I was in crisis. Those around me, even though they were there for me, didn’t quite understand why this was affecting me so brutally. I’d sob in my husband’s arms and talk about my hair constantly and obsessively.

My hair was the last thing I’d think about before I went to sleep. And it was the first thing on my mind when I woke up.

For a long time, my sanity was held together by a group of strangers, women across the country and around the world who, like me, are struggling to conceal their hair loss and handle the deep emotional toll it takes.

We met on the Women’s Hair Loss Project, an online support network where we traded information about treatment options, coping mechanisms, hair pieces, the numbers of hairs that fall out (yes, some of us count) and where we lauded considerate doctors and condemned dismissive ones.

Our stories had commonalities: Losing our hair made us feel unattractive, unworthy, less womanly. It robbed us of joy. We withdrew. “I want to die,” one woman wrote. In public, we studied other women, envious of the hair that they take for granted.

I had that hair once. I marvel at old photos. At the time, I didn’t realize or appreciate how much hair I actually had.

I do what I can to hide what is happening. I had my hair cut shorter to make it appear thicker. I part it a certain way. My hairdresser styles my hair frequently, blowing it out with a big brush. I am beyond grateful to her.

Still, I worry about others noticing my hair loss, about what my head will look like tomorrow, next week, next year. When I commit to a social engagement months away, one of the first things I think about is what my hair will look like by then.

For a long time, I’ve kept my secret close to me. But it’s been exhausting. I may not be at the point of my hair loss being that noticeable, but I know one day it will be. What then? I am afraid it will send me back into that dark place.

For women with genetic hair loss, the options are limited. We can use Rogaine (which works on some people but only for as long as it is applied), take medications that will suppress our levels of testosterone and increase our levels of estrogen, or look for something cosmetic like a hair piece. We are desperate for a solution.

I’ve lost faith in the medical establishment. I’ve been dismissed by cavalier doctors who undoubtedly looked at my head of hair and thought I was crazy. Everyone loses hair, they said. That’s true. But for most people, that hair grows back. I knew all along that my situation was different; my follicles were dead. I just wish I hadn’t been right.

I’m grateful I don’t have cancer or some other life-threatening illness. Yet this has cut me to the core. My 7-year-old daughter knows not to touch Mommy’s “delicate” hair and asks why I frequently wear baseball caps.

At the grocery store, at church, at the mall, I notice other women with genetic hair loss. We are a sorority of suffering sisters.

My hair is still falling out. In fact, lately it seems to have increased. It still makes me sad, but I know I have done everything in my power to remedy it. It’s time to stop fighting and to accept the cards I have been dealt.

I know I’m making progress. I have transitioned from hysteria to detachment. I no longer cry about my hair loss. I am loath to give this any more power. This is part of who I am. I shouldn’t be ashamed, but somehow what is happening makes me feel less than the person I used to be.

I am more than my hair. At least that’s what I constantly try to tell myself.

soundoff (397 Responses)
  1. Chanel A.

    I thank you for this article. I, too, am struggling with alopecia and even writing this and after reading your story I am fighting back so many tears. Well, until they are now streaming down my face. I admire you new found courage and I'm not quite there yet. I started losing my hair at 19 or 20. Same time my dad started losing his. Mine is gone all in the back of my head except for the edges and some at the crown and at a little patchy at the front of my hairline. I am now 30 soon to be 31 and I am just so unhappy most days about my hair.I just bust out and cry at any moment just when I think about it. Even with other health issues, I talk to God and say "I can deal with anything and take meds for it and be okay but God PLEASE make a way for my hair to grow back PLEASE." Ive tried wigs and weaves which gets rather expensive and can be very uncomfortable especially with sleeping, being around others, hot weather, swimming, getting on rides, being around friends, and most of all dating (I'm single). It truly can become the center of your life and it affects what you do. Like you said , you'd worry about the future and how you'd handle your hair. Because not even monoxodil worked for me (at least i dont think it did), I recently decided to do away with the wigs and weaves and let my hair/scalp breath. So now I've graduated to head wraps. I bought all different types, patternd, and colors of scarves to wear on my head daily. Still shopping for more. I look up different ways to wear them especially because I work in an office setting. I can't just wear them any kind of way. So far it's been working. And to try and feel better about the situation, I am trying to talk about it though it can be embarassing to say the least because people just dont get it. They dont understand the mental toll it takes on you as a womana. I hope and pray that one day I can be like you which I see as courageous. I would like to just shave my head and wear it just like that, patches of hair loss and all. Just to be free. Haven't made it there yet but one day I will. Thank you so much again for this article. You have touched my heart deeply and pray for your peace with this and all other women who suffer from hair loss because it is not easy.

    July 30, 2015 at 07:30 | Report abuse | Reply
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  7. Winning the fight against thinning hair

    To all of you experiencing hair breakage and/or thinning hair: check your protein intake. After years of struggling with brittle, breaking, thinning hair and experimenting with hundreds of products for healthy hair, I finally had success converting my hair back to a healthy condition by increasing my daily protein intake. While I always maintained a healthy diet, my protein levels were not enough to maintain healthy hair (and nails). After increasing my daily protein intake (about 20 grams more than the recommended amount) I quickly saw stronger nails, and my eyebrows started to fill in. With a continuous monitoring of my daily protein, I am now experiencing stronger, shinier, healthier hair. I, too, looked to doctors for an answer to my brittle, breaking hair, and all the tests came back normal. I tried many, many hair care products in the hopes of finding a combination that would help my worsening hair condition. I was frustrated and depressed that I couldn't find an underlying cause. Then it occurred to me that, though my diet was healthy, perhaps my daily protein level wasn't enough to maintain healthy hair and nails. For me, that was the answer. So if you are struggling with thinning hair, try amping up your protein and look for results.

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  8. raamit

    My heart goes out to u all who are experiencing hair loss... It is just not physically that we suffer, it is an emotional and social issue too... I have had people recommend me all sorts of treatments for hair loss, most of them medicated shampoos. None of them were without harmful side effects. I would advice everyone to use natural products like aloe vera, argan oil, buccopa munneri etc to treat hair loss...

    October 13, 2015 at 05:11 | Report abuse | Reply
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  10. sandra

    Yes we are definitely more than our hair...... but we are defined, by others, by our hair it seems so much. "Your hair is so nice and thick"....... "your hair is so pretty" ....... "wish my hair looked like yours"....... on and on ..... but we come to realize, we are still the same person without our crown of glory. I am grateful I can buy hair and not have a life threatening disease. As I began to loose my hair soon be 13 years ago, my husband was diagnosed with colon cancer. When we went to his dr appointments, I sat there noticing the women coming and going with each visit. I praised God many times for only having alopecia. Yes, it would be a blessing to have my thick hair once again, don't get me wrong. I gave it to God ..... if His will is for me to have my hair once again. I will indeed praise Him.

    March 7, 2016 at 01:30 | Report abuse | Reply
  11. sandra

    I forgot to mention in my previous comment, I have lost all my hair..... eyebrows, eyelashes and all body hair. As I said before it will soon be 13 years. I have hope maybe some day God will give me hair again. 🙂

    March 7, 2016 at 01:36 | Report abuse | Reply
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  16. reena

    I could understand the situation that u guys undergo. I am a twin and both of us suffer from female pattern baldness that started in early teens and I am 23 now and it has worsen my hair loss than before leaving us completely bald in the crowning section. I am a corporate professional and we hate to face others at office. We are desperate trying multiple doctors and still haven't found a solution so far...mom's more worried looking at us and neither of our parents suffer from hairloss...I am still waiting for the day where i carry a normal hair like others and stop thinking about it...there's no sec that passed without thinking this...mom's the only support in my grievance.

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  19. Cheri

    You are telling my story! Like many other things in life, unless it has directly happened to you personally, the level of understanding just doesn't exist. It really is a sad statement that although successful hair transplants are common place in our male dominate culture, the same successful results are not often. Losing ones hair is a death of sorts, a friend that has been your constant companion through thick and thin (no pun intended) until which time your companion decides to make an unannounced departure. I feel you and the hundreds of thousands of women that have gone before us and braved this process
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  23. Tina

    When I first started losing my hair I was 17. It started as a small patch in the top of my head. I really didn't pay much attention to it because the rest of my hair was so thick I was able to easily cover it up. Now in my 30's that bald spot has grown to the size of a baby's palm. Hair loss can be so depressing. I started hiding from family and friends because I didn't want them to comment on how thin my hair had become. One day after wiping tears from my eyes because my hair had been shedding like crazy I decided to do something about it. I had gone to a dermatologist which provided little help. I search online to see what other women were doing and found out about hair toppers on Oprah.com. I came across the Enchantop hair topper. Hair topper are perfect alternatives to wigs (at least for me) because they are lightweight and not nearly as hot as wigs. They only cover the crown of the head which is where I need it the most. There are lots of places to buy hair toppers online. I bought mine from from https://www.gorgeousstrandz.com. I went with the Enchantop medium. It's a human hair topper that I can style like my own hair. My husband loves it! Now I no longer hide out in the house because I am embarrassed by my hair loss. Hairpieces and hair extensions are some of the best inventions for women like me. If you can't regrow your hair it's great to know that you can at least find options to help you feel like yourself again.

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  24. Monica

    I am going through hair loss as well, it's devastating! I am anxious and depressed, I lost my self esteem, I know no doctors will find out what causes hair loss because I wasn't born in USA I was born in Central America and for 24 years I never ever lost so much hair until 2 years ago when I came to Florida and within 2 weeks I started to shred like crazy, I thought it would be temporary due to moving out of my country but after 2 years of constant shredding I know as long as live here my will hair will not stop falling out, I honestly think it's the food, all the hormones pesticides chemicals antibiotics pollution have my entire body upside down, constantly bloated, constipated, hair loss, low sex drive, skin issues, ovarian cysts, I have it all. For me it's obvious because I was never ever sick until I came here,no bloating no hair loss nothing! I wish I could tell everybody how bad food is here, it will kill you!
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    Reading this article, I realize no doctor wants to find out a solution to this issue, it's all about money, u lose your hair u get desperate then u get transplants which costs thousands of dollars, if nobody was bald then they wouldn't make any money! They actually want u to be bald! It's just like all these companies who claims their chickens are no treated with hormones yet every time I eat chicken I get constipated and bloated for 3 days
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    April 29, 2017 at 09:39 | Report abuse | Reply
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  30. Linda O'Grady

    What a wonderful article. I don't feel so alone after reading this. It is truly devastating. And I too have given up on doctors. I use synthetic fibers to hide the whit of my scalp, but that solution will have its expiry date. I am on a mild antidepressant, but it doesn't stop the shame. No one in my circle if friends is going through this so no one fully understands my pain. Thanks again for this article.

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  32. Name*Laurie M

    My hair loss journey is like a cookie cutter image of yours. Tried so many different remedies with the hope of maintaining and even regrowing some lost hair. It is hard to accept the changes that happen as we grow older. Though I am thankful I am just losing hair and not battling a dreadful disease, it is still hard and I too am fearful of what is yet to come with my hair loss. Considering a hairpiece....tired of the time I spend trying to cover of those bare spots. Good luck to all those hair loss sufferers out there. Just know your not alone....it’s more common then one might think. And how many women are wearing wigs and ya can’t tell?

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    • Name*Jude

      Your story sounds just like mine. I was diagnosed with androgenic alopecia 2 years ago. I have also tried everything with hope that it would stop or slow down my hair loss. After two years of minoxidil, spironolactone, laser comb and PRP treatments I realized nothing was going to work for me. My hair gets thinner and thinner as the months go on and it only started two years ago. I am at the point where I think people are going to start to notice! I am devastated. I cry all the time and I cannot be happy anymore. I never, never stop thinking about it. I am in such a dark place. I don’t want to go out anymore. I don’t want to look at myself, I hate mirrors. I had such thick hair. Everybody said I wish I had your hair it is so thick. My hair even feels different. I can’t even feel it anymore. It feels like nothing on my head. I don’t even look like myself anymore. I admire you so much. I wish I can get to where you are. I try, but my emotions take over and I feel sick to my stomach. Hair loss is such a horrible thing to deal with. It takes all the life right out of you. Thanks so, so much for your blog. Knowing that there are people just like me makes me feel that I am not alone, It’s brave people like you who make a difference. It’s people like you writing about your own experience that makes us feel a little better knowing we are not all alone.

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Get a behind-the-scenes look at the latest stories from CNN Chief Medical Correspondent, Dr. Sanjay Gupta, Senior Medical Correspondent Elizabeth Cohen and the CNN Medical Unit producers. They'll share news and views on health and medical trends - info that will help you take better care of yourself and the people you love.