Replies to This Discussion

Permalink Reply by Stephanie on January 6, 2012 at 3:13pm

Sorry to hear this, Rachel. You have come to the right place for support though, as well as information. You are not alone! :) Stephanie

Permalink Reply by KimF4L on January 6, 2012 at 5:04pm

Hang in there, I am with you it has been a very trying experience for me. Mine started to fall out Feb 2011 and all was gone by May 2011 and I am still struggling with the AU issue. I am trying a solution from India for the next 6 months to see if it helps along with a few other things like nutrition, aromatherapy, and supplements. I hope things improve for you, this is a difficult thing you need never apologize for feeling frustrated or sad that is very normal, you are human and your hair is part of you and you have every right to feel sad with each strand that falls. Best of luck to you.

Permalink Reply by Figarosmom on January 6, 2012 at 5:07pm

Saw your post and immediately had to sign-in even though I haven't been here since before christmas I think. Definately you have found the right place. Right now you probably feel very alone and odd, like you are the only person in the world going through this. Well, what you discover here is you are not alone at all. In fact there are alot more people with hair loss than you ever knew. Now I feel like, well normal. I am used to seeing people with hair loss or no hair for that matter. Once it becomes "normal" it is much easier to cope with.

All of your experiences above we all can relatte too, even someone like me with androgenetic alopecia. I always say hair loss is hair loss. Doesn't matter how it falls out.

Right now the best thing you can do is talk, keep a diary of your feelings and let yourself feel whatever you feel and don't let anyone tell you otherwise. I recommend crying a lot cause it really helps. Find a quiet place to go and just let yourself cry.

Then I will say what I tell everyone on here, start looking at hair options like wigs, etc. They soo help you feel normal. If you want to learn more about wigs go to wigsupport.com. For myself, I don't technically need a wig, maybe a good topper eventually, but I got some any way because then I could try them out. It helped me alleviate any fears I had about them. Now I admit I kinda like them.

But right now you are probably not ready for that. Take it one day at a time.

Permalink Reply by Angie on January 6, 2012 at 8:47pm

Nothing you said is superficial. You were proud of your hair and you should be. When ppl say it's only hair or be glad it's not something more serious, it really bugs me. We were created to have hair and when hair begins to fall out prematurely, it is a signal from our bodies that something is off. I don't have alopecia, but my son does. He began losing at 18 mos and lost all, including eyebrows by the time he was three. However, I am hopeful that one day it will return. Since so much is unknown about alopecia, there is always hope. You are young and it just started falling out, which means your follicles are plenty alive. I suggest staying away from traditional doctors and their so-called medicines (especially steroids) because they are treating the condition blindly.

I strongly recommend building up your vitamin D level, preferably with the sun. If not, then use the real D3 supplement (as opposed to synthetic D). Also, your dr's should check your mineral levels as my son, along with vitamin D, had some low mineral levels. Also, stay away from processed foods, McDonald's, etc. and anything that you may be allergic to. My son had terrible eczema, some digestive issues along with the alopecia. He has since turned the first two around. All we're waiting for now is for the hair to grow back. He has lots of fuzz, so I'm hopeful they will stay. We are also trying the treatment from India, although I'm not religious about it. The main issue was building up his immune system so that his body would stop fighting his hair follicles. Then, the natural hair process will take over. Whether it does or not, my son knows that he is loved. He is confident and knows there is no guarantee that it will ever grow back (he's 4 now). The point is we are positive and trying.

I know I rambled on, but you keep positive. That's one lesson my mother always taught me growing up. Don't listen to other (negative) ppl; anything is possible. You'll be amazed what you are going to see in the many years ahead of you!

Angie

Permalink Reply by KimF4L on January 6, 2012 at 8:51pm

Angie that was awesome =) Well said!

Permalink Reply by Figarosmom on January 9, 2012 at 10:14am

good points about allergies and vitamin d. I know that hairloss has been associated with gluten intolerance so its worth exploring. As for vitamin d, anyone living in a colder climate that has cloudy weather often needs to get vitamin d checked. i know in Wisconsin, most doctors believe there is a big problem with this because we have lots of cloudy days.

Permalink Reply by cindy Babs on January 6, 2012 at 9:32pm

Hi Rachel.it sounds like you are doing all the right things to "deal" with this condition. It wreaks havoc on our emotions. It isn't "just hair" at all. The loss is a deep, personal loss that causes us to grieve. It's a really difficult process and time.however, having said that, I am here to say it definitely does get better . so you should count on that. You seem wise and experienced and will b fine. Hang in there. We are always here for you. Sending u a smile.

Permalink Reply by Ellen Chinery on January 10, 2012 at 2:44am

Rachel,

So welcome to this site. I'm not on here all of that often. But I stumbled upon your discussion and felt the need to reply. I went through a very similar situation. I mean, the course of this condition is different for every person, but the feelings are all the same. I don't have much advice, but I'd just like to share what I went through with you, and maybe it can help to make you feel a little more at ease.

I have to say that reading this was moving and as I read it, I felt all of those same feelings that I haven't even thought about in a while now. I know I'm about to write a (short) novel, but I hope you glance through it and I hope it can maybe help. And honestly, I'm not saying any of this to scare you by any means. I'm just praying that by sharing my experience and strength with you, that maybe you'll start to feel some hope...no matter what happens! It's not superficial how you are feeling; not one bit. It is completely natural. Fear. Anxiety. Sadness. Confusion. Ashamed. Lonely. I feel so much for you <3 I was just a little younger than you when my hair started falling out, about 19. This wasn't that long ago by the way...I'm 23 now. It started slow for me. It started in patches, and everyone assumed it was just stress and poor diet. Everyone told me I was over-reacting and that it "wasn't that serious". Losing that much hair every time I took a shower was devastating. I won't lie there were many times where I just wouldn't shower for days because I was so damn scared. I spent hours trying to do my hair just right and used millions of pounds of hairspray so the wind wouldn't blow my hair out of place and reveal a bald spot; it was exhausting. I stopped wanting to go out because I was so scared people would find out. I hated myself, because I thought I was defective. I hated other people, because they had all their hair! I was completely consumed by it, and so obsessed over what the outcome might be or what I could do to try and prevent it. All of this sucked the life out of me, and turned me into a miserable, sad, angry person. It finally got to the point where by summer 2009 I had my brother shave my head because I was sick of going through all of the fear. I put off going to the dermatologist because I was in such deep denial and I was too scared to find out what was really going on. I saw all sorts of doctors. And it took wayyyyyyy too long to get any sort of results or information. That period of waiting was unbearable. I was going crazy. And driving everyone around me crazy, because it was all I could talk about. It took a while to find answers and then after a few months I was diagnosed with Alopecia Areata. I got a few rounds of cortisone shots and it seemed like everything was going to be just fine.

Once my hair had been growing in for about 8 months, I felt a little extra hair in my hands while shampooing. By the summer of 2010 the hair on my head had fallen out completely. It seemed like overnight! Then about a month later, my eyebrows and eyelashes fell out. I tried the cortisone shots again, but it was clear they weren't going to work this time. I was then told it was Alopecia Universalis. I did not handle this well, as you can imagine. Trust me, I am in no way implying that this will happen to you, from what I hear, it's not too common. :) But honestly, I shut down. I couldn't talk about it for a good year without sobbing. Even though friends and family tried and tried and tried to convince me that they loved me no matter what; I just could not hear that. I thought my life was over. And at certain times I did consider killing myself (extreme, I know), because I just didn't think I was strong enough to handle life anymore. I hid ALL of the mirrors in my house, or covered them up. I felt like I looked like an alien. I had lost my beautiful curly hair and my killer eyelashes (I'm still pissed about my eyelashes :P).

Wanna know the craziest part? I wore a sweatshirt hoodie for a long time. With the hood always up. That was what I felt was the best way to deal with it. Crazy when I look back on that. I really fought the notion of wearing a wig. I don't really know why. I just felt like it wasn't "me". And by going out and buying a wig, that was really accepting that this was my reality; I soo wasn't ready for that. I did however buy one, just for school. Even though I hated it and felt super uncomfortable, it was a step in the right direction. Anywhere besides school though, I wore those freakin' hoodies. Didn't matter who I was around. Family? Close, close friends? No way, I was still too horrified and uncomfortable. No matter what anyone said about how their feelings toward me had not changed one bit, I JUST DID NOT BELIEVE THEM. The way I thought about it is, well...I look so drastically different on the outside that my insides must have gone just as horribly. For a long time I thought that I did something "bad" and that losing my hair was my punishment. That is just insane. The hoodies lasted for me for about a year, up until this past summer. I'm not sure what happened, but one day, my best friend just sat me down and we talked it out. And things started to click after that. I still wear a wig for work and for school. At this point I think that's mostly because I have a tattoo on the back of my head. Yeah! I thought it would be bad ass (that second time my hair fell out, I was convinced it would grow right back in, LOL) if I had a secret tattoo. Not so secret anymore! HAHAH. But besides that, I don't like to wear anything on my head. I'm still not THRILLED about the fact that I have Alopecia. I have my moments where I still like to ask "Why me? Why not that girl? Why not that dude? Why not anyone else, BUT ME?" But those moments seem to be fewer and further between. And sometimes I even catch myself looking in the mirror before I leave in the morning, and think "Wow, yeah I look different. But why is that such a bad thing? I still look beautiful today." I love who I am. And the package that I come in is something I'm gonna have to get used to haha. I'm thinking someday I'll get to a point where I can have fun with it. Bald headed one day. A pink wig the next day. A plain jane brown one the next.

And OH MY GOD, I was so nervous to be out in public. I was scared what people would think about me. But I mean, I get all sorts of reactions from people. Actually most people don't even notice. Everyone is always too worried about what other people about THEM. But you know, there are people who ask questions, or stare. Some people are just insensitive and say things that they don't mean to be hurtful...like that co-worker of yours. If you're going to be working with her for some time, and if it would make you more comfortable, I would suggest bringing it up. It can just be a quick convo. You said that you don't like sharing your emotions with other people, but this may be a good time to say how you're really feeling. Maybe ask her to lunch. Or if you're not that invested in this co-worker, then I'd say just try to avoid her :) You know people sometimes do things that are normal and harmless in their own minds, but can absolutely crush the person they're doing it to. Sometimes I get mistaken for a dude (that's the hardest for me I think). And they might say something and end it with SIR. Boy, do I hate that! Like they'll just glance at me, I guess, or it just doesn't compute in their brain to see a bald woman. I get that. I do. But it doesn't make it any easier. I still don't know what to do in situations like that. But then there are really cool things that happen. Strangers come up to me and tell me how fantastic I look. That blows my mind! And just recently, a woman approached me and asked if I had Alopecia. We got started talking, and she has it too!! The first person I've met who has it! She was wearing a wig, and had her eyebrows and such tattooed on. She couldn't stop gushing about how amazed she was by me, and how courageous I seemed. She explained to me that she LITERALLY doesn't go anywhere without a wig. She won't even let her own mother see her without a wig on her head. Moments like that make me care a little less about the fact that I have Alopecia.

What sucks about this, is I don't think that anyone who hasn't gone through it can really, truly understand. It is a very serious loss. I mean we won't die from it, that's true (I always hated when people would say "Well, at least it's not cancer"...ughhhhhhh). But it is like a loss of our womanhood and femininity. I am not a very religious person and I don't talk about God all that much or anything like that. But I do think that things sometimes just happen and our goal is to try and use what ever it is that comes our way and grow from it, and maybe even one day help another person who is going through a similar situation. And if I were to say anything about God having a hand in this situation it would be that he has a pretty ridiculous sense of humor. Because I lost all of my hair (AU) and yet I still have some serious underarm hair. WTF is that?! And also, sometimes when I'm feeling kinda down, I try really really really hard to convince myself that maybe, just maybe God chooses the people that he thinks are sooooo incredibly pretty that they don't even need that stupid hair. It just gets in the way. :)

"I am not my hair" by India.Arie is a really great song :) I must have listened to that song like a billion times. My favorite line is "On national television. Her diamond eyes are sparkling. Bald headed like a full moon shining. Singing out to the whole wide world like HEY..." :)

Okay so OMG, I got way too carried away. I am sooo sorry for this long reply! And I am so very sorry for talking about myself for so damn long!!! But I do hope you have a few minutes get a chance to read it and maybe even get back to me. Let me know your progress, and maybe even what you're doing to try and cope throughout all of this. And honestly, the thing I'd like more than anything from you reading this is that maybe you find some sort of hope in this challenging time you're facing. It is something that is so far from being in your control, and I think that's the hardest part. The unknown. I don't, as I'm sure you don't, know exactly what the outcome of your current situation will be. But I just want you to know that whatever happens, you are a beautiful woman inside and out. What's happening isn't fair, that's a fact. But there are ways to deal with it and even become empowered by it. Right now it seems as though you're losing part of yourself, but it won't always feel like this I promise! Things will start to get easier as long as you keep reaching out for help. And talk about it missy!!! USE this site. You know I joined it when all of this started happening...and then I was just too depressed and kind of gave up. I barely ever logged on and wasn't very active. I'm trying to get back into the swing of things. But this site has tons of people who have gone through similar things. And they want to help and spread hope to people who are struggling. Even if you only have one or two people you feel comfortable with, talk their freakin' ears off. My god, I used to just scream and cry at my mother for hours and tell her how unfair it was, and why me?, and I'm hideous, and what's wrong with me? But trust me, you will get through this. You're a strong young woman and you can handle anything. Even if you don't believe that...It is true, I promise. And I really hope none of this was too corny haha. Just know that I'm here whenever you need to vent or have questions or whatever. And again sorry for giving you my like whole life story :)

ellen.chinery@gmail.com
that's my email. and if you want, look me up on facebook.

hope to hear from you soon :)

Permalink Reply by Molly on February 4, 2012 at 10:08pm

Ellen, wow...I have no other words. this was an amazing post. you've hit it out of the park. It's brought tears to my eyes.

Permalink Reply by Amanda on March 10, 2012 at 9:52pm

Hey there Rachel! I am new here... today is my first day! This past week I was diagnosed with LPP (Lichen Planopilaris) which is a scarring alopecia. I was also diagnosed with a D deficiency a couple of years ago too. You seem like a really cool girl and I wanted you to know that you didn't deserve to be made fun of at work. I am so sorry that people can be so ignorant. I hope that you find the strength to get through this even though it feels like you never will.
I hope I can get through it. I am also wondering how I am going to hide my hair loss. Like you I seem to be able to get away with it for now. Should I start looking for wigs now? Should I shave my head? A part of me wants to rebel and shave my head and get a tattoo on the side of my head and smile like all of the beautiful bald women in the photos that I am finding on this site.
Rachel, stay positive! I feel that it is all I can do as well until I start the long and complicated regime my doctor has prescribed.
I hate it and love it that we are not alone in this. Thanks for sharing your story and keep smiling, cool girl!

Permalink Reply by Kteacher on January 1, 2013 at 3:05pm

I know this post is really old, but I read it, and I actually feel exactly the same way as you do (or did) then. I'm so bummed :(