My Life With Hair Loss

by admin on July 16, 2008

My Life With Hair LossWhen 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/

{ 15 comments… read them below or add one }

lisa1969 July 16, 2008 at 7:56 pm

~Y, You have such a beautiful way with words. Unfortunately, we don’t appreciate what we have until it’s gone. That’s true whether it’s our hair, our money, our health, or anything. I also never could have imagined that this would be my fate; my hair was so darn thick and lush that others envied it. But it is what it is now. And at some point, I have to accept it. I think once I do that, I will regain some control over this. If you have any sage words for getting there, I’ll take them. :) Thanks for writing this. — Lisa

BethS July 17, 2008 at 5:31 am

Everything you said could have come from my mouth, only I am now fifty years old and wasted a lot more time crying and fixating (and even contemplating suicide) than you did. Yes, the hair loss is worse now and it still bothers me. I also avoid mirrors and never look at myself when I come out of the shower, but I put my hair back in a ponytail and I use Toppik around my hairline,(a great product that really helps restore your confidence), and I live my life. Right now, my mother is blind, my sister-in-law has lymphoma, my dad has cancer, and I am healthy and have thin hair (also pattern baldness). I feel like the luckiest person in the world! I have even gone back to school to become a teacher and spend my days with twenty-somethings and I am okay about it.

My hairloss still makes me ache inside, but with age has come acceptance and I hope that all of you will come to this place a lot sooner than I did. One day you WILL stop mourning and obsessing about your hair loss only then you will mourn all the years that you didn’t appreciate what you had, like your youth for example.

I am glad that this writer has come to this acceptance and I hope that many of you who are suffering will soon realize, that in the scope of things, this burden is one that can be carried. With love, B.

Rachael Jean Harper July 17, 2008 at 8:14 am

Yes, there comes a time when, for our own sanity, we have to accept the hand that we are dealth with. There are so many women out there with thin hair. If we do have hair we should appreciate what we have and stop the stress of running on the hampster wheel. If we don’t have hair, wigs and hats work, or wigs and hats off for the the brave and beautiful. Easy to say, I know, but easier than living a life of obsessing and hiding.

Life is really good. We need to remember that and live it to the fullest, even with thin hair, or with-out. I will always feel pangs of regreat for my lost full hair, but today that is all that they are, and they really don’t last for long. My hair has stopped falling out, and my hairline has grown back, (I attribute this to good nutrition), but is still thin. I am grateful for this. I will take what I can.

You sound good Y. You are a gracious lady. Hugs, Rachael Jean

Carly July 17, 2008 at 11:03 am

It is so inspiring, hearing your stories of how you’ve learned to cope with hair loss. I try each an every day to be strong. It’s been a rough road. When it first started happening, I was in my early twenties, and desperately searched for a cure. I tried a few topical formulas marketed to help woman’s hair loss. Some minor success with one, nothing with the others. So I’ve stuck with the one, with which I’ve seen some minor improvement. It’s hard to keep up the application regimen of 3X a day…so I apply it, as often as I can.

Also in my search for a solution, I had a horrible experience with a hair replacement center (a fraudalent one at that), that purely preyed on the insecurities of those who suffer with hair loss, and felt they could took advantage of us, also due to the limited knowledge most of us have in this area when hair loss is first thrust upon us. That was truly a nightmare! Thankfully I paid with a credit card, and IMMEDIATELY stopped payment on this purchase, once I realized what had happened. I luckily did not lose my money…but what I DID lose, was trust in anyone in this industry.

It took years of research, along with some trial and error, to get the more thorough education that I have today, regarding this subject.

It took a while, but I eventually found a hair replacement center that I can trust, that is honest, and treats me with the respect I deserve. It is the replacement I purchased from them, that gets me through my days. I wish I could be as brave as all of you, and feel good about what I have. Although I do try and appreciate all the good I have in my life, it is still hard to deal with my hair loss. Thank god for this hair replacement…it is what helps me not think about this 24/7. It covers my thinning hair, and looks so natural. I dream about my hair actually looking as good as the replacement does. I try and stay hopeful that something will come out, someday, that can help me achieve this dream.

I’ve heard from the salon I go to, that some clients have had some positive results utilizing the recent technology “laser hair therapy”. I think this will be the next thing I try. I actually considered hair transplant surgery, but just cannot get myself to take the step, and go to another consultation. I did go to one many years ago, and just was not ready to truly consider it. I’ve recently seen this procedure done on tv, and see how painful and difficult it can be, not to mention the results may not be what I expect. That’s alot of money to spend, for all that pain and for the iffy results.

So for now, I just take it day by day. I’m an outgoing people person, so having this happen has been traumatic. But through the purchase of this replacement, I’ve found some peace in my life. The sadness has not permanently gone away…deep down I still wish for something better. But at least, this allows me to live my life, go out in public, and be myself. I am truly grateful for that. I do think about how much worse it could be, if this option had never been invented.

I’m so glad this forum is available…for us to discuss this difficult issue, with others who can understand what we’re going through.

eldorado July 18, 2008 at 9:51 pm

Hi Carly,

My husband had hair transplants when they became popular in the 80’s. They were successful and not painful for him. You need a doctor that specializes in doing them! It is really not a big ordeal.
When they first did this proceedure they used what looked like a ‘hole punch technique’. Although all the hairs grew in very quickly, they were not placed close enough together and lacked a natural look.
His doctor notified him they had perfected a way to fill in in those blank areas with graphs so you didn’t notice the little round circles of hair growing in ‘groups’. It was a great improvement!
I guess it’s been 20 years now and his transplanted hairs are ALL are still there and growing! However, through the years his hairline on the back of his head got lower and lower! So, it’s something that a person might want to plan ahead for (monetarily speaking).
The ‘donor site’ of the patient had to have hair from the lower sides of the back of the head (maybe just guys). I don’t know what is required now.
Well, good luck to you in whatever you decide is right for you. Your attitude is wonderful.

~ Eldorado with T.E!

Karen July 19, 2008 at 9:23 am

Y-
I read this post this morning- It really blessed me as I had a difficult night last night as I realized that my hair loss is not going away or getting better. I stopped taking birth control pills in Dec. 2007 (I had been on Lo Estrogen FE for years) and began noticing that I was loosing hair in Feb. 2008. In April I mentioned my concern to the man who cuts my hair and he he confirmed that my hair loss was not “just in my mind.” I made an appt with my doctor- he tested my thyroid levels- they were normal. I then made an appt with my gynecologist and she ran tests on my hormones and they were normal. But she did confirm that she knew of patients that lost hair as a result of birth control pills. (Boy, I wish I had known that was a side effect! I started on them because I had ovarian cysts…….) I stopped one problem and started another one! I then went to my dermatologist and had more hormone level tests run……..normal. Ugh. I cry because I know there is no way for me to control the number of hairs on my head- I do not have the power to make my hair stay in my head! I pray, I take vitamins, I exercise, I have done everything I know to help my body be “in shape” and nothing seems to help. I am tired of looking at the drain in my shower and picking up the pile of hair after I shower. I am tired of worrying about the hair that has fallen out during the day and is on my shoulders. I am tired of worrying about whether or not I am covering the two places that I know are “balding” on the top of my head. I am tired of analyzing EVERY SINGLE female I see and trying to determine if they are struggling with hair loss also. I never imagined that I would be 43 years old and so consumed with my hair! I feel shame and I don’t know why. My biggest fear is that I will be at work in August (I work in the public school system) and someone will say…….”What is happening to your hair? Are you loosing it?” I know I have lost more since school ended in May and I am so nervous about seeing my coworkers again in August. If anyone can tell me about how they handle people who say things to them about their hair loss, I would appreciate it. I don’t want my hair to consume my thoughts but on some days it seems to……….I know I have much to be thankful for- my husband says he will love me no matter how much hair I have but I have begun to feel unworthy of his love (I know that is shallow because our marriage of 18 years is based on much more than external appearances but it is hard when I live in a society that tells me that I need to not only have beautiful hair, but have a great figure, drive a cool car, and go on luxurious vacations!) I want to have the same hope that you have Y- that one day I can look at my reflection in the mirror and love what is looking back at me. Karen

BethS. July 19, 2008 at 10:40 am

Hi Carly:
I am a 50 year old female who had a transplant in the frontal hairline area. Now it has been eight years, and I need another one because of further hair loss. Without the first one however, I don’t think I would have anything at all to cover up the frontal area of my head with,so even though it could be better, I think I would also be worse off if I hadn’t had one.

A few things to keep in mind for anyone considering this:

– don’t let pain stop you. It is only terrible for the first 24 hours. Two days after, I didn’t even need Tylenol. (Those gory videos are enough to scare anyone off!)

– You Do need to have strong donor hair in the back of your head (like from ear to ear). If you are a woman with thin wispy hair all over the scalp, you will probably not be a good candidate.

-Expect some permanent improvement, but be realistic. No transplant will give you the thick, luxuriant head of hair of your youth. It can however fill in sparse areas that will allow you to style your hair differently. Remember you are not gaining more hair — it is just being moved to a more cosmetically useful location.

-Be prepared to have to have repeat sessions as you age and your hair loss progresses.

-The biggest problem with transplants for most women is the increased trauma shedding that occurs about three months post-op and lasts for about six weeks. This was the most traumatic aspect for me, and for awhile you may look even worse than before you started out! However within three months the transplanted hair does start to grow in, and the shock loss hair returns shortly thereafter.

– As i said, you probably won’t look dramatically different, in fact don’t expect friends to even notice the difference. You may discover though, that all of a sudden you can part your hair differently or pull it back for example and have it look passable. If this is enough to make you happy, then I recommend going ahead with the surgery. If however, you want abundant hair, I would recommend a hair replacement system, which truth to tell, over the long run will cost you at least as much money as surgery or more.

To sum up, hair transplant surgery is a good option for women who have a good donor area and realistic expectations.

Hope this helps …

BethS

julie July 19, 2008 at 5:02 pm

Carly, Can you tell me the type of hair replacement you have and how did you locate a salon that is reputable?

Carly July 20, 2008 at 12:23 am

Thanks Eldorado with T.E and BethS for your supportive words, and for your information about hair transplants for women. I don’t think I’ve ruled it out forever, and still think that in the back of my mind, the idea of trying it someday will always be there. And I think you’re right…it’s about what the doctor says regarding my donor hair, and also extremely important what my expectations would be. I don’t know if the result would be enough for me, to stop wearing a hair replacement. That would be a HUGE move for me. So I really need to give this a great deal more thought.

Even if I decide to try the laser hair therapy first, I still must wait until I’ve saved up enough money. That’s the tough part about this condition…everything we want to try costs a great deal of money. Although the money I’ve spent on hair replacements, I consider to be an investment in my sanity.

That leads me to Julies question about finding a reputable salon. Be careful not to respond to ads in magazines for hairloss, that give you the name and contact information for any salons who say they can help. I can’t say all who advertise this way are a scam. But that is certainly where I would feel they are questionable. The place where I had my bad experience, came from a magazine ad I read, while on a business trip. And of course I was very vulnerable at the time, being so upset about my hair loss. They were 2 hours away from my home. But I didn’t care about the time, because I thought, it wouldn’t matter the distance if it made my life better. What I would recommend, which is what I did after this experience, is to go to your local yellow pages. Look under Hair Replacement Centers or Just Hair Replacement. Some places can afford a large ad in the yellow pages, in addition to the regular listing part, where all businesses are normally listed in alphabetical order. Those were the ones I put at the top of my list, and then the ones just listed in the reg listing only, were on my list directly after. Not that this would be a certain way to determine if they are reliable…it was just a thought (if they can afford the extra space, I guess they are not some hole in the wall place with no reputation) Once you find a few close to home, then goto to each of them for a consultation. Any reputable salon should offer you a FREE consultation. If they want to charge for this, I would stay away. There is no reason for a consultation to cost money. Only the services that follow, if you choose to go that route, are what should cost any money. Take your time and meet with a few places, until you feel really comfortable with one. I did start out trying one I felt comfortable enough with, but later went to another I felt even better with, after their consultation.

Once you find a place, the hair replacement I suggest, should #1 have 100% Human Hair (that is the most natural). Synthetic hair is horrible to work with, and can get burnt with the blow dryer. Synthetic is like the material wigs use for their hair. It may look good for the first time you put it on, but having this long term, and wanting to wash, style with hair spray, like real hair, you must have 100% human hair. Wigs you typically don’t wash yourself, and cannot style with hairspray. You would normally take them to the salon for them to clean it for you. Real hair is easier to care for. Way easier.

If you’re working with REAL hair, you dry it as you would your regular hair, and it reacts almost just like hair does, that is growing from a scalp.

You will hear about options with percentages of real vs. synthetic hair. They may cost lesss, but are still not a good option. If synthetic is even a part of the piece, it will be difficult to work with, and not look as natural. So every strand must be human or real hair.

And #2 The very best quality real human hair out there is European Hair. It is silky smooth, and just the most natural looking hair on the market. Granted it will be a bit more expensive, but definitely worth the extra money for you to get what you expect, and to be happy with the results.

The cost will also be determined by the size of the piece you need. And even you have thin hair all around, does not mean you will need a full unit that covers your entire head. I have thin hair all around, but way thinner at the top or crown area. So I had them custom make a piece that is just enough to cover the crown area…and then the hair is cut into (or styled into) my own hair, and the length is blended into my hair.

#3 would be (stay away from places charging thousands of dollars for synthetic hair. That is the least expensive to make, and again the worst to care for. I cannot quote you a realistic price, since it would depend on how much area needs to be covered, but a small piece covering just the crown area, and made with 100% Human Hair, can cost up to around $1000.

Go for your consultations first, and get quotes from each one of them on what they suggest for you. Make sure they ask you what YOU are looking to achieve as well. That’s really important.

I hope this helps.

Carly

Carly July 20, 2008 at 12:37 am

Oh…I forgot to mention the attachment part. If you can avoid it…DON’T go with a permanent attachment. If you have enough of your own hair, you can get a unit that clips onto your own hair.

The permanent attachments, such as the ones that are braided or weaved onto your hear, will cause more tension to your real hair, and possibly in the long run make the hair thinner. And any attachment that needs to be glued, would have the same issues. Also not the best option.

My unit has 5 tiny clips, two on each side, and one in the very front. Having this type of unit, allows you to take it off every night when you goto bed, giving your hair a chance to breath, and not putting undue stress on your hair by sleeping with a permanently attached piece.

The permanent attachment methods also require you to go into the salon more often to have them tightened and or re-braided or re-glued, as your real hair continues to grow. A real hassle and just not something I would suggest, unless you absolutely have no other choice.

The salon you goto should also have only compassionate and professional people. If you are not treated well, during your consult, then walk out, and never come back. This is a sensitive issue and only the true professionals can be trusted. If someone does not treat you with sensitivity and compassion, then they are in the wrong business, and you are not in the right salon.

Best of luck.
Carly

misty July 20, 2008 at 6:21 pm

Hey ~Y… I always forget to come to the main website to read… I was touched by what you wrote… and you hit the nail on the head. This can be related back to almost anything you let take control of your mind. I’m glad you said it and put it into prospective… 10 years from now I may be in the same boat I am in right now… except I am still losing hair PLUS I have worried and obsessed over it for 10 years, effecting everyone in my life. I also let my mind wonder any time something goes wrong… mainly if I or someone is sick. I always think the worst… I always let my mind wander to the “what if’s” when it’s just a fever or just a headache. Now, a lot of that is my job causing things to pop in my head… I see bad stuff all day, every day. HOWEVER, what am I accomplishing if I freak out when my daughter has a fever (which she has had since Friday) Nothing… Kids get fevers, it doesn’t mean it’s leukemia. I tell myself this over and over… and usually I can talk myself out of a scare. I don’t want to turn around and Emma be 30… and know I worried all through her childhood.

Thanks for saying things that people need to hear. You may not realize just how many of us need to hear something. We are dealing with trying to move and relocate and it just isn’t happening. Stress is high and I was telling my oldest friend that I have prayed and prayed and I don’t even know what I want to pray for any more. She looked at me and very nicely said, “stop trying to figure out what you want to happen so you can ask for it, just pray that God will allow what He wants for you” Man, that smacked me in the face. How true!

Ultimately, this is all out of our hands! Everything is out of our hands. Acceptance is hard… but once it happens, then we can move forward and take the day that we have been given and live!

Thanks!
Misty

mj September 14, 2008 at 8:39 pm

I got on this website for the first time today. I resisted signing up, I probably dont want to believe that I could be a permanent member!

Y, reading what you have written is like looking at a mirror. All of us share the despair, the hope and the crushing hopelessness, the tears, the anger at ourselves at not being able to cope….

I noticed that everyone has gone through the same emotions. I realized that the feeling of sadness does not go away, we dont get ‘used to it’ like one might get used to a constant bad tummy or headache. But Life does go on, and the choice is to be normal for the remaining 99% of the good things in my life, or to dwell and burn in this 1%.

I’m trying to get to where the 99% is more important. You are all helping me to accept what I am going through, to realize that it may never get better or even stable. I have no control over that, and letting go of the need to control it may help me handle myself better.

Its just reassuring to know I’m not going crazy.

Love you all for making me feel better for the first time in over a year.

mj

admin September 15, 2008 at 6:25 am

Dear MJ –

I’m glad you decided to make a comment and join the network. I truly believe the healing starts here. Sharing my feelings feelings and listening to other share theirs has had profound effect on my ability to live with hair loss. I use the word “Live” not to remove hope from others, because some women ARE able to only have their hair loss journey as only a hiccup in their life, but the reality is also that others like myself need to move beyond and dig deep for self acceptance and realization.

Our hair is important to us, who would deny that? But is it worth losing years of our lives and tormenting ourselves with self hatred and loathing as we stare at our reflection. Heck No. I try to gain inspiration and strength from other people who are dealing with things far beyond hair loss, yet continue to thrive in life. I want to be that person. How do THEY do it? I don’t want to let my hair loss take me down, it has already robbed me of 9 years of my life. Everyday I am reminded of my thin hair as I comb it out after my shower and it falls into the sink. I can see the rake marks of the comb all over my scalp, something that I never used to see. But 99% of the time I’ll just let out a big sigh, tie it back and move on with my day. I used to fall to the floor in tears in be inconsolable. So does it getter easier to LIVE with hair loss, I think so. A lot of women don’t want to hear that because that isn’t an option, they just want their hair back. I get it, I totally get it, and for some women they will not have to deal with this for the years that follow. But there is no downside to just learning to love ourselves more, so even if you get all your hair back, you will have grown some as a person and be better off.

Welcome to the site, and welcome to the network!

~Y

Vicky May 27, 2009 at 1:53 pm

Hey I’m writing to ask anyone here about the pattern of your loss. I have aga and noticed it first thinning in the temples but now its affecting my hairline. Dr Redmond says its normal for women to have this pattern as well as when the hairline is in tact with thinning behind it. My question is does anyone here have my pattern? Does it become so obvious that you have to wear your hair over your forehead. Please help thanks!

Christy June 11, 2009 at 6:11 pm

What a wonderful message. I’ve been thinking a lot lately about this very topic and I love how you put it – what you would have done differently. We all have to go through our own processing system, and mine took an especially long time, but now I look back and wonder why I wasted so much time hiding when I could have been living. I’m not hiding any more. Thanks for sharing.

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