Replies to This Discussion

Permalink Reply by Tallgirl on July 6, 2014 at 1:29am

I have a ring of wispy whites on my head, but after almost-AU, I got back eyebrows, eyelashes, body hair. I have given up on the head hair, though.

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Permalink Reply by Jeanette Langone on July 5, 2014 at 5:20pm

Hi...one thing I find that always works for me is to count my blessings. Things could be much worse, we all have our heartaches, and it helps to put things I lost my hair when I was ten and it never grew back. I was

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Permalink Reply by youarebeautiful on July 5, 2014 at 6:21pm

I understand your pain and frustration as we all have been there in one way or another with our hair loss.  Just this morning, I was actually enjoying (never would have thought this) looking at my wig catalog trying to figure out what my next style will be.  Yes, I have my days of sadness, but I was actually excited that I can make the change.  I can rub my head at home when my scalp itches.  I am beautiful and you are too.

You will have to accept at your own pace.  I am not yet ready to be seen in public as bald, but I sometimes walk in my home without a head scarf.  I don't even care as much that my bald spots are showing.  I have endured so much sadness in other areas of my life the past few years that my hair is my last worry.  God Bless you.  Also, I can relate to the counseling, but even give yourself a time limit (frequency etc) on that.  You will find that when you release yourself of the therapist (in your timing) that you will feel less constrained.   You will find other ways to build your strength.  I believe in counseling as needed for short periods of time, but give yourself credit.  I truly understand and do not judge, I just want you to spend your money on travel, gifts for yourself, spa days, shopping trips, girls night out etc. Here is a great big hug for you.  We are here for you.

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Permalink Reply by Debbi Fuller on July 5, 2014 at 7:13pm

Hi Susan,

It's not a matter of being a 'quitter'.  AA or AU will do whatever it decides to do whether you accept it or not.  The best way to deal with the loss of eyebrows and eyelashes is to find ways to 'fix' them.  You can get great eyebrows tattooed on and even if they fade over time, you can easily buy some eyebrow powder and sealer to make them look great every day and it takes just a few seconds to do.  Eyelashes have a learning curve, but thousands of people with the same problem put them on every day in just a few minutes.  It takes practice, but you can do it if you are motivated.  Depression is a huge issue and if it is clinical, you need to probably go on some sort of medication but if it is  truly the result of the alopecia, then you CAN have control over it.  Try to focus on the positive things in your life and there are MANY.  I would not go back to before I got AU - not for any amount of money.  My life is BETTER after getting, accepting and embracing my alopecia.  I can truly tell you that if my hair grew back tomorrow, I would shave it off rather than have to deal with the dark color, the grey and probably the thinning that goes with age!  My friends who are my age are totally jealous that my hair looks better than theirs does!  I tell them, "well, just shave yours off!"  It's great that you are seeking help here.  We've all "been there, done that".

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Permalink Reply by Robert Linscott on July 5, 2014 at 10:15pm

 Hey Susan,

 I have had AA for over 20 years. It fell out, grew back than fell out again. So I just shaved even before it was the in thing to do for guys. People thought I was either a cancer patient or my favorite a skin head. I have a nice melon so it wasn't that bad for me. Every time I thought about getting upset about it I think of the pictures I saw of young ladies around 7 years old with Alopecia Totalis. I can't imagine what they were going through because kids can be mean.

Find your picture or whatever keeps it into perspective.

The good news is that regrowth is possible. I just happened to me recently actually. I have two small spots that are covered up by the rest of my hair. The only thing I was doing different at the time is that I started a medication called Gabbepentin. (Spelling?)  Not sure if it was the meds or just a coincidence. Anyway keep your chin up and be proud.

Desiderata-Whether or not it is clear to you the universe is unfolding just as it should.

:)

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Permalink Reply by Tovah on July 5, 2014 at 10:41pm

I don't think anyone on this board would think that what you're feeling is wrong. 

It's our hair whether we loved it or not.  Now I would give up anything to get back to the place where I could at least hide" my alopecia.

I felt really great about using the rogaine, however, I'm starting balding again all over as I don't know if it's the rogaine or the hair pills that has caused my hair to start balding again.

I hate it. Really. Looking in the mirror and seeing the head with all the bald spots.  I haven't taken a picture yet of this new development, as I just feel like I'm starting over again.

So... you are in my thoughts and please just hang in there.

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Permalink Reply by Fiona on July 6, 2014 at 1:06am

I also have AU.  I had AA on and off over the years, but always just a few spots that regrew with treatment.  July last year I was in a regrowth phase where all the little spots had regrowth and then suddenly it u-turned and in very short order I had so little hair I had to go to a wig.  Slowly I lost all the hair and then my eyebrows and eye lashes.  Like you my eyes have always been my most attractive feature.  I use makeup to cover the loss.  I use an eyeliner that you put on with a brush and make sure that it covers the edges of my eyes where my lashes should be.  I also use an eyeliner to fake in eyebrows.  I go dancing 3 times a week and with my wig, no one has picked up on the fact I have no hair!!  The truth is that people see what they expect to see.  Even friends who know, say things like "well your eyebrows are growing back in" and they are not.  Honestly people do see what the expect to see.  So use make up to line your lovely eyes and to draw in eyebrows.  It will help you feel better.

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Permalink Reply by Johanna on July 6, 2014 at 12:07pm

Hi
I no longer have hair on my arms and legs but have substantial regrowth on my head. I have 75% of my eyebrows and 80% of my lashes left. They tend to come off and grow back again. When there is less, i use more eyeliner and eye brow pencil to hide the loss.

6 months ago I was almost bald, only VERY little hair left on the top of my head. And now I am already looking forward to getting rid of my wig (at least I hope to be able to!) once the rest of the hair grows back. Alopecia is so unpredictable, but in my case, losing your body hair has not meant your head will be bald, too. This regrowth has happened without any treatment, only reduction in my stress levels, plus healthy diet (nothing radical, just very little wheat, gluten and sugar, lots of berries, healthy salads etc).

I don't think you should give up hope, but while you wait for your regrowth, please try and make the most of your life each and every day. Its hard, I know!! After I bought a wig last November things changed for the better! I was depressed, too, but the wig gave me my freedom back. And once I realized people couldn't tell it wasn't my real hair, I stopped feeling insecure among people and simply went on with my life. Its not always easy, but IMO life with a wig is much more carefree than having to hide your bald spots. My wig also helped me reduce the stress I was having BECAUSE of hair loss. Whether it comes off or grows back, you no longer have to worry so much, because either way, you have hair/"hair". A wig sounds much more frightening than it actually is. Take it from someone who thought it would be the end of the world...

Stay strong!
Johanna

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Permalink Reply by Charlene Jooste on July 6, 2014 at 12:15pm

Hi Susan
I had AA on and off since grade 3 but could always hide it so that nobody noticed.

When I had my first daughter it got worse and with the birth of my second daughter all the hair on my body fell out. No hair anywhere!

At that time I was still studying and realised that I will have to apply for a job. I had to stand infront of a class of 35 students, knowing that I had no eyelashes or eyebrows. It was stressfull but the following make up tips helped me to look more natural:
Purchase a hard eyebrow pencil, it must not be soft so that it can draw clear lines when you draw your eyebrows. I use Rimmel dar brown eyebrow pencil. I use about 3 a month as I sharpen it allot. I find if the point is sharp it makes more thinner lines and therefor looks more natural.

Put on some babypowder on your eyebrows line before drawing the eyebrow on. This will ensure that it will not go off or smudge if you accidentally touch it.

Use eyeliner. I prefer dark brown as it looks more natural to me. I like the soft one. Also Rimmel ( it is a make in south africa, dont know if you have it over there)

And of course a good synthethic (spelling) wig. I prefer short styles as it looks more natural than the longer ones.

Hope you feel better soon. :)
Charlene

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Permalink Reply by Amy on July 6, 2014 at 12:20pm

Susan, just started my third round of shedding 3 weeks ago and I'm losing my hair very, very, fast! Lost my hair for the first time at 35 and had such a hard time with it! Wore expensive human hair wigs that didn't look good but did have my eyelashes and hair on my body. It all grew back and then fell out again when I was 39 and this time with my eye lashes and eyebrows! Again I was really sad! I was able to learn how to apply my makeup in a new way and started using latisse which for me worked! My eyebrows first came back then my eyelashes. I started wearing synthetic wigs and loved them! Strangers asked me where I was getting my hair done and this gave me a new confidence!!!! My hair did grow back and just this year I was able to go without my wigs. I am now 42 and it's completely falling out again and I can honestly say I DON'T CARE!!!!!! I'm already back in a new wig and I'm getting compliments from strangers on my beautiful hair! I started the latisse again as a preventative but the eyebrows and the eyelashes could still fall out.

It took me years to get to this place. But I truly am happy. Look at wigs! Buy synthetic, they really look great! And try different lengths and colors! Get help with makeup, don't apply eye makeup they way you have always in the past! Change it up!!!! Good luck!!! We all understand what you are going through! I have a hole in my wall from a brush I threw a wall 6 years ago!

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Permalink Reply by Fiona on July 6, 2014 at 3:34pm

I found strength through this forum and the wonderful people on it.  I dance, I show dogs, and a lot of that is about appearance so I got a wig and was wearing it all the time.  I ride a motorcycle, and can not wear the wig under my helmet, so was doing a sleight of hand to try to get my wig on before anyone noticed.   I went out on my motorbike to a tourist town, where no one knew me.  There I was about to try my 'trick' and I suddenly thought "what the L"!! and decided to go "topless"!!  I walked around totally bald and no one gave me a second look.  I wandered into stores and chatted with the check out girls and went to a coffee shop and sat at one of their tables on the street treating myself to a pastry.  It was so totally freeing.  Of course that one step did not lead me to instantly go wigless, but slowly I started not wearing it at home and then after that when I was where no one knew me.  

I have friends who have cancer and have no hair as a side effect of the treatment.  I have a wonderful friend dying of the worst kind of MS.  She is to the point she can not even pee without help!!  She is so STRONG and positive!!  I came to the realization that there are FAR worse and deadly things to have than AU!!  I started looking at the positives.  No such thing as a bad hair day.  No helmet hair.  I can shower and go to bed without having to deal with wet hair.  I never have a bad hair day.  With summer coming on I am going 'topless' more and more.  My husband loves my smoothness and no hair in my intimate area.  VBG!!  

I decided to 'come out' on Facebook.  While I have not posted any photos, I told about the AU, what it is and why I am getting more ok with it (its not fatal and its not contagious!!!).

So I still wear a wig when showing dogs and dancing because I feel 'prettier' that way, but on a day to day basis I go topless. Now all the stress of AU has left me.  I just love when the Drs say "its caused by stress, lessen the stress in your life" when the very AU was causing your stress!!  Yeah - that is SO helpful!!  That is gone now.  Slowly I came to this place and it was caused by the wonderful people HERE.  Their strength and their courage.  I have had AA off and on since I was 27.  Last July it suddenly stopped any regrowth and started on its path to AU. I have no hair anywhere, no eyebrows or eye lashes.  I use make up to cover that fact when I am out dancing or dog showing, but not on a daily basis.  I am 51

I have realized that if someone has a problem with how you or someone else looks, that is THEIR problem not yours.  I have been approached now by people who have had cancer or who have relatives with cancer.  I explain I don't have cancer, but have AU and that I am lucky - its not life threatening.

Truly if you understand that there are FAR worse things out there to have, it helps you deal with AU.  

Love yourself first.  Appreciate your life.  Find the positives.  Hang out with people who appreciate you for who you are.  Wear a wig if you want to and don't if you don't want to and to "L" with what others think.  Its about being comfortable in your own skin.  I happily accept any friend requests so if you need someone to chat with, friend me

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Permalink Reply by Susan McAdams on July 6, 2014 at 4:27pm

Wow. I am quite blown away by the huge outpouring of support on this site! Useful advice, sharing of personal experience, and words to keep me in perspective. I do have so much to be grateful for--I know that. Of course, it would be naive to expect anyone experiencing Alopecia should just count their blessings and all sadness goes away. I miss my hair--even though it was fine and difficult to manage. I feel sad that my three daughters have to feel the effects of what I'm going through--or that their mom looks "different" than other moms. I know it's silly and superficial to write, but I would be lying if I denied those feelings that arise. The key is to work toward chasing those negative thoughts and feelings away over time--through support, self-reflection, maybe seeking some spirituality, I don't know. I continue to work at it.

I have been slowly re entering the dating scene after a horrific breakup around the holidays (a wild, yet destructive 4-year relationship with a narcissist). I follow the "second date" rule--if I click with someone to the point of a second date, then I tell him about my hair. So far, out of those I have told, about half couldn't care less, a quarter were clearly freaked out, and the other quarter, I have no clue but there was no third date. I am 45 years old, in amazing athletic shape and at my prime. I hope there are men out there in LA who can see beyond the superficial. Unfortunately, this is probably the worst city on the planet to experience this. I wish I could move, but my ex lives here and so must my kids, too. Any dating stories to share?

And if any of you live in the Los Angeles area, let me know. There only one support group here, and the times are very inconvenient. It would be so nice to connect with someone in person over a Cupid coffee or glass of wine, just to validate the fact that this is not a shameful disease.

Thanks again, everyone--
Susan

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