Written by Mary
Hi everyone,
I’ve just joined and I want to share my alopecia journey with you. This may be longer than it’s supposed to be, but I hope my experiences will help someone. If you want to put a face and voice to this narrative, please check out my YouTube video entitled “Alternatives to wearing a wig”.
I had patchy alopecia for 7 years, beginning out of the blue in my late forties. The round spots were always confined to the back or sides of my head, and were easily hidden under my thick brown hair. The frequency of the spots increased in the last few years, but they always filled in after monthly cortisone injections. My daily routine was checking my scalp in the mirror for new spots and for the status of old ones, and applying cortisone cream. I always worried about the spots moving to places on my head that would show. But, after so many years, I also sort of figured I’d never lose all my hair. Wrong.
Exactly a year ago, my hair loss began to rapidly progress. New spots appeared on top where there had never been any; old ones enlarged to take up most of my scalp and merged with others. I obsessed about losing it all, and was often depressed and crying. By January 2008, I had as much bare scalp as I had hair, and the bald areas were too extensive for cortisone injections. We took some final photos the night before I shaved my head on January 30, 2008. I saved some pieces of my hair. The photo you see was taken right after my head was shaved, and still shows stubble and my real eyebrows and lashes. I have no eye makeup on in this photo; my eyes were dark and my eyebrows very distinctive.
I felt better immediately! No more scooping up hair from the floor every day. No more examining my head to check the bald areas. No more crying over the spreading bald spots. And, it was much more comfortable under a wig or scarf than when I had the patches of hair. Shaving it all off gave me a feeling of control.
Via a local support group, I heard about a casting call for “Shear Genius” on Bravo, and was one of 8 bald women with alopecia featured on an episode that was filmed the end of March. At the taping, I still had my eyebrows and lashes, but they were gone by mid-April. The show aired July 23, and many times after that. (You can see the whole episode on YouTube under “Shear Genius 2 Episode 5”.) It was a great experience meeting the other women, all of whom had been bald for many years. I’ll probably never wear the wig from the show – way too heavy and thick, and I picked a color that wasn’t a good choice. [click to continue…]
by angela on October 26, 2008
As I was surfing the net this morning I came across this little, almost obscure article. Of course, since it had to do with hair loss, I clicked it, and to my amazement (although I shouldn’t be surprised) here I am reading about the Hepatitis B vaccine and HAIR LOSS!
I am posting the links below to the articles that I read this morning so you can go check them out. It pisses me off that hair loss is NOT one of the side effects that they warn about when giving people the vaccine. Studies are being done about the psychological effects of hair loss and women and yet no one thinks that announcing that it does in some cases cause hair loss would be important for US to know?
Have any of you ladies been vaccinated? Now the reports that I have read predominately talk about the Hepatitis B vaccine, but can we be sure that this is the ONLY vaccine that causes hair loss? How about the flu vaccine? or the one for pneumonia? How about HPV?
Can some of you ladies put my fears to rest? LOL I am so traumatized by this, that I can’t even write properly about it! Can you lovely ladies each tell me when you first started noticing your hair loss and if it coincides with ANY type of vaccination you may have received within that year? I am really curious and mortified at the implications of this!
How many college students were required to get vaccinated and THEN started to notice that their hair was falling out and thought it was just STRESS!
How many women were entering the nursing or medical profession and started losing their hair around the time of the required vaccinations?
How many teachers are out there, that are required by law as well to be vaccinated before they begin teaching? [click to continue…]
I wish this post would be something more uplifting, but that isn’t the way hair loss always works is it? I sit here during my ninth year of hair loss all puffy from the crying spree/ meltdown I’ve just endured. Why today, why now? For the most part I have really accepted my hair loss and the thinness of my hair. But I guess the pain, sadness and frustration still floats close to the surface even though I usually keep it under wraps pretty well.
So what the heck happened?
It’s been over a year since I’ve been in for my annual hair cut. My hair is way too long for the thinness that my hair currently has. I can’t go back to the salon, my hair is too thin and I would be way too self conscious. I previously confided my hair loss to my hair stylist and she was understanding and careful not to tug on my hair and also let me comb it out after it was wet. But that was over a year ago and I’m even too embarrassed to have her cut my hair in my home. On a previous visit she had told me she could do that for me, which I thought would be great, until now. Here I am, stuck, helpless and tired.
Who can just cut my hair? I need a stylist who has hair loss, who is sensitive to the issue and who lives in Los Angeles and who can come over to my house, OR a stylist who works for a salon that has private rooms. I was recommended a local place by a friend in the network (Thank you Lisa) but it is a hair replacement salon, and I am afraid that after they get a gander at how thin my hair is that they will want to push me toward that direction of adding hair to my own, and I’m not mentally ready for that yet. I just want a haircut, why can’t I get a haircut? [click to continue…]
by Y on September 11, 2008
I wrote this in response to Lisa’s recent blog entry “Lost Cause,” and thought it was worth reposting here as well.
Dear Lisa,
I can so deeply internalize your struggles. Is this drug helping… Is it making it worse? There are so many unanswered questions about women’s hair loss. This may sound a bit odd, but I think the longer I’ve lived with hair loss the easier it has gotten for me. I have just a speckle of the hair I had 4 years and certainly 9 years ago, but somehow I just deal better. Those years I didn’t get out of bed half the time, sat in the shower crying and had my mind set that my life was over.
It wasn’t over.
I awoke this morning and fastened my hair tie (wearing my hair down and *feeling* feather hairs is more of reminder) grabbed my coffee and the day begins. I don’t dwell on the looking at myself anymore and I suppose that is the difference is in my hair loss life from not too long ago. I can easily get wrapped up in the balding spot and thinning areas I meticulously cover up with my little Houdini wand called the “comb.” But it serves no purpose. I am doing everything I possibly can and I rest easy knowing I tried EVERYTHING. They say “God helps those who helps themselves.” I’m certain I fall under that category, I’m still waiting to be freed from the shackles of hair loss. “God.. I’m ready now” 🙂
I’ve prayed at home, at the chruch, to St. Jude, to the high heavens, to anything holy and divine that could save me and save my life. Clearly it appears that being a woman with hair loss in this day and age requires an “Act of God” for recovery… “God. I’m ready now.”
The truth is, in some ways my prayers have been answered. No I didn’t grow the hair back I so intently prayed (my exact words where “please let my hair grow back in thick and strong”) but I wanted my life to be saved, and it was. Through better coping mechanisms, new perspectives and improved attitude I can at most times regard my hair situation with some indifference and strength. Huge milestone, “Thank You God.” [click to continue…]
I am just about to head out the door, but I wanted to make a quick post about my exciting new way to comb my hair. I’m always looking for new ways to avoid having to constantly be smacked in the face with the fact that I’m losing my hair every time I comb my hair after a shower. It is pure torture to just stand there and watch the hair fall like strands of spaghetti from my head. The darn hair is gonna fall whether I look at it or not, and when I’m going through a heightened shedding period I’d really prefer not to watch. I need CONTROL. I’ve done the “blind comb” where I’d sit on the bed with a towel around me and comb my hair without a mirror, then I’d pick up the towel (not looking of course) and take it outside…shake shake shake.. and I’m all done! No hair loss. Crazy huh? Okay it gets even crazier.
I’m so frustrated with the fact that I’m still going through these shedding periods and I truly don’t have a lot left to lose. So about 20 minutes ago I was standing comb in hand, wet hair, and staring at the sink. It was like a duel out of an old western movie. I glanced at the toilet, I glanced at the sink and back to the toilet. The hair is gonna end up in the toilet anyways so why don’t I just shorten the trip! I squatted around the toilet and comb my hair, the hairs fell right in and I flushed them away. I don’t know if I lost one hair or 200 hairs! Oh sweet harmony that felt good! I mean seriously, really liberating.
What makes dealing with hair loss so hard is the lack of control, the feeling of the inability to do anything to make those hairs stop falling out. The helplessness. These little things give me back control. And instead of watching my hair fall out of my head, a feel a sense of relief and I go out and enjoy myself at the movies. Whatever helps you get through the day. 🙂
So I just read a story on The Bald Truth website that sparked a touchy nerve for myself. The guy wrote he had “hair envy.” Oh my, how I can very much relate. I find I’ve lost countless seconds, minutes and hours of my life lusting after other women’s hair. If I ever witness a crime, I won’t be able to offer much other than a complete description of every hair follicle, of each woman who was in the room. Color, length, density, soft, dry… whatever, you name and I’ve taken note of it.
I am frequently absent from conversations of the company I am around because I’m too busy having wandering eyes for women’s hair. In the past it wasn’t uncommon for an entire day to be ruined because I saw what appeared to be a 90 year old woman with crazy, rich, silver, thick hair that could surely land her smack right in the middle of a Pantene commercial. How unfair! I started losing my hair at 21 and she STILL has ALL her hair. But as my mom always used to say “Life isn’t fair.” How true. Nine years of hair loss has shown me how unfair life can be to people, and I am talking about more than hair. Mental note to self… I got a raw deal, no two ways about it, no one should ever lose their hair at 21 or 30 or 40 for that matter. But, be thankful that I have my health, a wonderful partner, a great family and a pretty darn good life aside from this “hair thing.”
I never appreciated my thick hair when I had it, I wish I had. Everything we have can technically be “on loan” so we have to try so hard, even on those days when the shedding has us scraping the floor, to appreciate what we have today. I am reminded of the song “Everybody’s Free” by Baz Luhrmann. In the song he says, “Don’t worry about the future. Or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubble gum. The real troubles in your life are apt to be things that never crossed your worried mind, the kind that blindside you at 4 p.m. on some idle Tuesday.” and then he goes on to say “Do one thing every day that scares you.” and I’m thinking, uh I DO.. I SHOWER and COMB what’s left of my hair. 🙂
Just for kicks, here is the video of the song “Everybody’s Free!”
When I was younger I never ever could have imagined that my destiny was to be a woman with hair loss. The thick mane (clearly on loan) that I was born with was only a temporary gift. Over the last 9 years I’ve suffered a lot, but I’ve also learned a lot. I’ve become a stronger individual and also someone is more compassionate, forgiving and understanding of others around me. I suppose depending on your religious standpoint one could argue that God had wanted to challenge me, test me and make me a better person. I’ve searched for answers high and low, a deeper understanding of why, why me? For myself to live and stay sane, I have to personally believe that there is a “reason” that this was thrust upon me at 21 years of age. So I go with that, whatever helps you sleep at night right? I practically slept through my 20’s feeling sadness and despair for the future… what will be tomorrow. I feel such a heaviness and sadness when I write that, a get a lump in my throat and my eyes begin to well up with tears. I feel a sadness for yesterday even though it’s gone and far behind. Almost like I’m mourning the years I’ve left behind, the years of hair loss. I look back and I realize it was so needless to stay in bed and hide from the world. All along the way I had enough hair to get by and not have the world know my dark little secret.
I would really like to drum that message into the minds of the women who are waking up today and realizing they are losing their hair. You still have A LOT of hair, more than you know and the world isn’t staring at it, only you are. Someone once asked me what I would do differently looking back on the years I’ve dealt with hair loss… I would have lived more. I would have said yes to more dinners and social gatherings, parties and quiet get togethers, I would have let my hair down instead of trying to hide what was only visible to myself. After all during all that time, I still had enough, but I was too focused on the worry of tomorrow to appreciate what I had today.
I am 30 years old now and don’t want to make that same mistake. There is no doubt my coping skills have far advanced over the years and I can snap out of a “down time” a lot faster. I still struggle with things like talking about my hair loss, letting others into my world. I still have a long way to go (hopefully with hair still on my head) in self acceptance, but I’m pretty proud at how far I’ve come. I still run away from mirrors and turn off lights, it is all apart of how I’ve learned to cope. I hope one day I’ll be able to stare at myself in a store window or leave the harsh lights on in the bathroom, look at my reflection and love what is looking back at me. This is me, this is who I am, I have female pattern hair loss… the hand has been dealt and now it’s is up to me to either learn from the past or guarantee myself future regrets.
~Y
http://community.womenshairlossproject.com/womenshairlossproject/
So I got an email today from a friend I sort of have lost touch with over this last year. This is a person I never confided to about my hair loss and the more severe and less able to hide that my hair loss got, the more I distanced myself. I make up reasons why I can’t get together, work this or that… and she just emailed putting out an open invitation out there to meet up with her and another friend I lost touch with as well. I just burst out into tears and started crying uncontrollably. I cried because of how I must make others feel by avoiding their invitations for get togethers, I must seem like a flake. I cried for my inability to tell them “this is why.” I know they’d understand but I don’t want to be scrutinized I don’t really want any questions and I just prefer to hide and keep to myself. I cry for myself, for the torment that hair loss has caused me, and for any pain it has caused me to most likely cause others by my actions.
As most of you have probably already noticed I haven’t written very much lately. I’ve just been sort of trying to refocus my energy to get through this really really tough time. As I write I have to pause as I cannot see the screen though all my tears that keep falling like water out of a facet. I cannot be certain as to why I am going through another very bad shed, I should know by now that I probably should just stop asking why and move on.
For the most part I get through my day, but with a sadness and awareness each time I touch my head or see my reflection. I avoid all mirrors even the ones in grocery stores. I run past store windows for fear I’ll catch that glimpse that will ruin my day. That is how I’ve worked to be able to main a quasi productive day and to live my life… avoid my reflection, turn off the bathroom lights before entering, wear my hair up in a ponytail type bun so that I do not feel the lack of hair I have and to avoid having to be reminded every second of the day that I’m losing my hair as another strand falls on my arm, shoulders or back.
I just took a shower and washed my hair, it pretty much is dried already by the time I take a comb to it, thats how thin it is now. I comb through, saying any words of comfort to myself, a prayer, the alphabet, anything to keep myself busy while I get through the toughest part of my day. The hair falls out so easy like gobs of spaghetti. I consider taking the razor to my head right then and there and just being done with it, but I decide against it for the moment. I’m usually much stronger than this when dealing with my hair but I’ve felt so sad and weak lately. I remind myself it is only hair, and if this is the worst thing that ever happens to me then I probably should consider myself lucky. I feel so sad right now, a heaviness that just sits on me. It’s 4:35pm do you think it is too early for a glass of wine? 🙂 I think not.
P.S. Forgive me if you’ve written to me and I have not answered yet, I will definitely get back to you. I’m just trying to piece myself back together right now.
So I am starting to go through a bit of a shed once again. Still not terrible and much better than the last 2 years, but a shed none-the-less. Here is my lemon into lemonade update. As most everyone probably knows who has followed my story, I lowered my synthroid dosage awhile back since I felt it was contributing to my excessive shedding. The shedding slowed down dramatically and I’ve been trying to enjoy each day that I don’t see a gazillion hairs laying in the sink after a comb through.
It has been probably a couple weeks now where I’ve noticed my hair starting to shed more and more. But I’m still doing okay, why? Because the hairs that are shedding are full length, long and strong terminal hairs. This is such an improvement for me. In the midst of my most horrible shedding time, my hair would shed all different lengths of hairs, one inch long, two inch, four inch, six inch, 1/2 inch and some that even looked the size of arm hairs. That would depress me to no end because I felt my poor hairs were not getting even the slightest chance at a decent hair life cycle. They were exiting my scalp way too prematurely, so any new growth would just fall out. Shedding long hairs, while not pleasant either, means that my overall hair cycle is improving and stabilizing. I least that is how I have decided to interpret it! It keeps my mind healthy and strong, and allows me to continue on with my days. So whether it is true or not matters very little, all that matters is what my mind believes. 🙂
Be positive, be positive, be positive.
Also, just a reminder, tomorrow (Thursday April 10th) is our first women’s hair loss support chat meeting at 6:30pm – 7:30pm PST. If you are interested in joining us, sign up in advance for an account in the network. http://community.womenshairlossproject.com/
You’ll need to login to your account tomorrow at that time and click on the “Chat” link in the top navigation bar. Hope to see you there!
