Your story went to my heart. It is a story I know well. I have suffered hair loss since I started menstruating at age 13. I am now 55, and have gone through hair loss bouts for more than 40 years. I started with thick, wavy, very long hair; I’m half Lebanese and women from the Middle East are known for the kind of hair I once had. I guesstimate that I have lost 7/8 of the total. Despite therapy and every imaginable “cure”—including the laser comb and, recently, bioidentical hormone therapy, which has been a scary, irrational, frustrating process—my hair will not cooperate. It is “lemming” hair—it simply wants to walk the plank and jump off. I go through periods of mourning even now; I will not look at old photographs of myself. There are times when I will not leave the house. I never look at myself in public restrooms, including those at work. I have missed so many gatherings, occasions and opportunities because of this affliction. Despite therapy, I don’t seem to be able to join the human race in the normal way. It’s because of my hair, and as long as the loss continues, I will continue to avoid people, strong lighting and the simple pleasure of feeling the wind in my hair.

I don’t like short hair; my head is oddly shaped and it makes me look like an alien, so I desperately hang onto my shoulder-length strings and cut a fringe that I wear straight up to cover the shiny scalp and crate the illusion of fullness. It is humiliating and, I find, impossible to deal with in the humid conditions of my home state. But it’s much worse to suffer the disdainful comments and looks of those who will never have to deal with this curse.

I will tell you a secret. When I was 14 years old, suffering through the first year of the hair curse, a “friend” walked into the girls’ lavatory at school and announced to me and everyone else that she had noticed how thin my hair had become. “It’s thinned considerably,” she said. I remember her exact words. She was a popular, pretty girl (who’d later become the local homecoming queen in high school) with thick, slick, straight long hair that was the envy of the school.

A few years ago I heard from a friend that this person now has a bald spot in the middle of her crown and has to wear a wig to conceal it. I confess I was delighted to hear the news at first. Delighted! I’m ashamed of that. But this person’s cruelty destroyed my confidence for so many years as she pecked at me with her insensitive remarks. I felt that she had created her own karma. Of course, I also feel for her. Hair loss at any age, for any reason, is devastating. It is one of nature’s cruelest tricks and I hope that someday it will be as rare as smallpox.

To this day, I still count the hairs that fall out of my head all day long. I’m ashamed of myself for this obsessive-compulsive ritual and keep my other equally deranged little routines to myself. I have a dear, understanding gentleman friend (with long, thick hair) who, despite his kindness, will never know the private abyss to which this problem has brought me. I will not live with him because of my hair. I don’t want him to see me crying as I vacuum the house (and sometimes the walls) each week or throw yet another expensive hair cure in the garbage.

Hair loss is hell. I could live with that for two more lifetimes to spare my daughter, who is beginning to experience the curse herself. When I was her age, I begged my mother to help me. (She told me I was vain and to get over it.) My daughter won’t talk about her problem. Ironically, she has decided to become a hair stylist and I am putting her through school to this end. The insensitivity of that industry is beyond my comprehension. She is forced to style her hair for every class, and it is breaking and thinning. I have tried to talk to her and to her “instructors” but it seems that this hair curse will follow both of us to the grave.

I have been suicidal about it at times, but would never go through with such a thing. My daughter needs me, my sister needs me, and I am so angry so much of the time that it keeps me alive. The rage keeps me alive. I feel I am at war with a curse that is in my DNA and that I have passed on to my daughter. Perhaps some day she’ll need someone who’ll understand and I will be that person. But I wish that weren’t the reason why I keep going. I wish, instead, it were for the sake of just being alive, enjoying the light, the wind, the water and the memories.

But it will never be that way for me. Like the women in this forum, I’m marked.

Thanks so much for listening.

Lilac

I feel like I’ve lost everything and cannot cope. I’m 33, and it started in my 20’s. In another year or two it will really be noticeable to everyone, though I feel it already is. I don’t know why doctor’s haven’t found a cure yet. When mine started they expected a cure to be found in approximately 10 yrs. or so. It’s been 9 yrs. of this for me and I have heard of nothing new- does anyone even care? Hairloss for a woman is the most devastating thing in the world to have to go through. I have no life. I am sad all the time.

Hope is all we have left. Maybe one day soon they will find a cure. I love you all and I pray everyday for everyone going through this terrible condition.

Mimi: Have nightmare of being bald too!! I also have dreams where I just stare at the thickness of people’s hair (men and women) I do that in real life anyways but yes my hair loss obsession even penetrates my dreams. Isn’t that the time where we are suppose be dreaming of bunnies or rainbows or something? The coconut oil hair treatment sounds pretty awesome. Hooray for new hairs growing in a everything else being a bit thicker!

Emma: I am not a doctor so I cannot speak definitively on this, but it is my opinion that the swimming pool Chlorine is NOT going to make your hair loss any worse. It may dry out the hair a little, but I don’t think its going to exacerbate any hair loss. I’d have no qualms about jumping in a pool everyday if that was my thing. So swim, enjoy, the relaxation and stress relief you get from it can only help.

When you say your mom wants to control your hair treatment what do you mean? I think that her wanting to be involved and supportive is wonderful, but you have to be comfortable with any decisions being made about YOUR hair.

Enjoy your swims, I’m more of a sinker than a swimmer. I tried to swim at a health club pool awhile back and I sware it took me FOREVER to get from one side to the other. I’m such a slow swimmer, definitely not my thing, I’m more of a runner. I remember there being like a 80 year old man in the next lane and he was just flying through the pool like a fish 🙂 There is something really undeniably refreshing about swimming though, so I can definitely see the appeal.

All The Best,
~Y

Does anybody know if going to the swimming-pool can make the process of hair loss and thinning worse? I just love swimming and it is my only stress-relief. Can chlorine or drying harm my hair a lot?

I’ve been reading all the posts on this website for half a day today. I can feel so much pain and emotions in all those posts. And any woman who has to deal with hair loss problem is really strong.

My Mom decided that she has to control my hair treatment, because I dont want to do anything…. If only she knew how many differnet shampoos I tried for the last two years I lvied away from her, how much money Ipaid for the vitamins or for other medications. I just dont know what to do any more. Also, my sculp is itching all the time…

Thanks,
Emma

Adliana – I know what you mean about having the exact same hair style for so many years. That’s what has happened to me. I’ve had to same style for more years than I can even remember. I was recently so jealous of a brand new hair style my sister had gotten. She looks so great. The style is so beautiful on her. And I did tell her so. She thanked me and said, you should get it done too, if you really like it. What she does not understand, is that I’m stuck exactly where I am, and can NEVER get another style. I need to stick with the one I have, that covers whatever it can. I am sometimes devastated when I think of how I will NEVER have the options my sister has, and get any hairstyle I want. I even think about all those make-overs done on TV, like when Oprah does them. And there is always so much emphasis on how their hair and make-up was done, and how those changes made such a difference in how they look. Of course the clothes they put them in helps, but the looks are never complete with just the clothes. Hair style is always a big part. I would never be a candidate for a make-over for that reason.

As I read through everyones story, I can really relate, and understand their feelings, as I have had so many of these feeling too. I’m so glad for this forum, so we can all be there for each other.

Carly

I am keeping everyone in my thoughts and prayers.
I read affirmations and Bible verses to lift my spirit. I even pray for the people saying things about me. For me, I have to take action or else I will spiral into what was said, what I should have done and countless other worries. But when I think of the greater picture, it is what God says that matters most. I read positive words especially when I feel down–because even though I lost my hair, I am far from losing my spirit or my beauty for that matter.

Love, Joy & Smiles
Lynnie