Comment by Jeff W on August 17, 2009 at 11:50pm

Annette, Welcome to Alopecia World! I hope you'll find this site as helpful as I and so many others have. You are definitely not alone! If you read through the blogs and discusssions you will find others who have gone through the same emotions as yourself. Also if you really need an understanding ear don't be afraid to seek professional counseling. Don't let this stop you from enjoying your family and life in general! Best Wishes!

Comment by Kris Fenchel on August 18, 2009 at 9:25am

Annette, You will find that everyone who is apart of this site COMPLETELY understands everything you are going through. The grieving, the embarrassment, the loneliness, the anger. I think that the best medicine is to get your feelings out, whether it is on paper or talking to someone. Finding a support unit in your friends or family or even strangers. The fact of the matter is that it is just hair, and it DOES NOT make you who you are. It is not an easy or quick process re-gaining your confidence, but it will happen! I think this web site will help you along the way.

Comment by Tallgirl on August 18, 2009 at 10:43pm

Once you figure out what YOU think looks pretty, then go for that style/look/state of being as quickly as possible for the quick fix. If you think hair is the ultimate, get the prettiest wig you can at a professional wig shop, even if it is another city (get references from long-time clients). If you think bald is best, shave tonight. If scarves are exotic, artsy, traditional or delightfully hippy to you, search out some great ones and order tonight (see online). You can ease yourself out of the other emotions while still presenting the You that you like to the world ASAP. The smile, confidence, and reflection...plus nice comments...will help to solve the other issues. Do NOT pick the choice that will make you feel UNpretty deep down, or the choice that only pleases someone else, but not you.

Comment by Barbara on August 19, 2009 at 12:49pm

Are you kidding me! People tell you “It’s just hair”?? They haven’t a clue. It is absolutely devastating. The physician’s assistant in my GP’s office is so totally supportive and understanding, while the dermatologist is basically, “bad luck for you.” But after the initial grieving (and reoccurrences when this darn this comes back!), you need to find ways of coping. This site (Alopecia World) is a great first step. We all understand!

My husband and a friend who had chemo are the ones who have seen my tears and grief, the rest (and this is a VERY small group) who know about it, seem more curious than supportive, and I am glad I have not shared it with a lot of people. Now if I get totally bald, I may tire of the camouflage and just wear scarves or whatever, but I am not there yet. I still have hair, and on weekends just wear a cap so I can get a wig-break in this heat!

Try to find something that works for you that you are accepting of and comfortable with. I love this site: http://www.tlcdirect.org. Affordable options. I ordered bangs from them since last week my head decided I needed to have some bald spots front and center. The bangs attach to hats and scarves. Since for work I wear a ¾ hair piece, I hope the color matches nicely and I will Velcro the bangs onto the headband I wear to disguise where the piece-hair meets my bangs. They are supposed to arrive today.

No one who I have not told knows it is not my hair, or at least has not commented! Though people do say they really like “the way you are wearing your hair now.” One person told me, “I know you were struggling to find a style for a while there and this one looks good.” Struggling to find a style?? Hardly – I was struggling to cover ointment gooked hair and bald spots with barretes, and mousse, and gels and sprays, until I got my hair piece.

Comment by ana on August 21, 2009 at 2:29am

i know how you feel. theres some days where i just dont feel like dealing with my hair loss i just wish i could go hide somewhere by my self. But i always try to look at the better side of life. Even though my hair sucks, my life could be way worse. There are people out there who are dying and suffering, people who have no food, or home, who have cancer. Sometimes i feel selfish for even feeling sorry for myself, but sometimes i cant help it.

Comment by Barbara on August 21, 2009 at 9:04am

Yeah - I was having a really down day yesterday....more hair loss, a call saying they wanted to check out something on my mammorgram (scary), my husband forgetting my birthday...I was having a real pity party over coffee with a dear friend (who knows about my hair and is a cancer survivor) and I told her, whatever this turns out to be - totally bald or enough loss that I have to cover it always, or something that runs it course and is over, or something that comes back over and over again...I will adjust. I am just not there yet. People have noticaeble things like burns or surguries they can't cover up and they get on with their lives. I know it, but I was just all about me yesterday. I am better today. My husband KNEW we were celebrating my birthday Sunday, and in his mind thought the actual date was Saturday and was not deliberatly not wishing me a happy birthday like I thought.

Comment by Shay and my girl Kaleigh :) on August 21, 2009 at 11:43am

I'm sorry your having such a hard time. I appreciate you being honest and giving others like me someone th identify with! I'm feeling the same way for my daughter, very sad mostly today. Its very new to me but I'm so glad I found this site and other people that are sturggling with it. Only my immeadate family knows and they are in denial so to speak. Her dad thinks its no big deal "thats what they make wigs for" but I think he will come around once the shock wears off. My mom just called to say she has told ALL her friends (thanks mom) and they have many other diagnosis starting with ringworm, I wash her hair too much etc. I feel soooo guilty because she had long beautiful hair and I had it cut recently to a short bob. Her stylist actually told me she had aa and now I feel horrible for her.

Comment by John M. on August 21, 2009 at 1:19pm

Annette - I can relate to feeling isolated. I just noticed my AA about 5 weeks ago with 3 spots. I now have about 7-8 spots on my head, some have coalesced into bigger ones. I only just had my 35th birthday a few days ago, and have been told that I've got high blood pressure and am trying to bring that down naturally. If you'll check my profile, you'll see that my wife is working abroad on assignment for another year, so isolated? You bet I am! However, I'm doing everything in my reach to stay positive, focus on my BP, and let the other things go. I know it's easier said than done, and sometimes I feel like I'm in denile. The scarier side is if you let yourself slip into depression. THAT is a tough struggle. Please try to stay upbeat, look to any positives in your life, and don't go down that bad path. I've only found this site since last night, but the stories here and personal journeys have been an immense help. Please reach out if you need.

Comment by Avis on August 21, 2009 at 6:43pm

Annette, you are not feeling anything that all of us have not felt. Your feelings are normal. That being said - your feelings can get the best of you. Try to take it one day at a time. A part of you is gone. You know that your hair does not define you but society does not know that. My shame of my hair loss has affected my relationships with others because it has squashed my self esteem. I have this wall built around me because I assume everyone can tell that I'm wearing a wig. SO WHAT? What does it matter that I wear a wig. I recently let my close female co-workers see my bald head at a water aerobics class. (I shaved my head maybe 7 or 8 months ago. Got tired of wearing a wig with the hair underneath - too hot.)They said all the obligatory things like , "You look cute"... etc. My response is - whether I look cute or not, this is the way I am. Stare until you can't stare anymore then move the heck on. I have prayed alot for God to bring me to a point of acceptance. He has. But I still wish I had hair. I don't know if that will ever change. I am learning to live without hair. It feels good. You will get there one day. Stay strong.

Comment by Joshua on August 22, 2009 at 3:50am

Hi Annette, I dont have much to add on to the wonderful replies you already had. Alopecia areata CAN be a life-long condition. I believe that instead of trying to "safe every strand that is left on your head", try to live out the life that you'll have always dream of. They are always people (that enjoys making stupid comments) that we couldnt get rid off from the society, trust me I still feel "irritated" occasionally. Don't take the statement that "its just hair" from people who doesnt understand because they spend most of the time and lots of money grooming their own, into what they called "JUST HAIR!"...a little hypocritical statement.

I'm nasty sometimes, think about what if those who made the comment "ITS JUST HAIR" come down with alopecia areata one day?...I couldnt wait to say that back ON THEIR FACE...I would said " As you've told me before, it just hair!"... and probably I would add "Its doesnt sound insensitive, dont you think? because I learn it from you!"

At the end of the day, I wouldnt want people like this to have alopecia, because alopecia is more like a blessing to me now than ever before. If it wasnt for alopecia... I am not where I am now. Self-praise is no praise, but I would like to make a generality of alopecia patients. Alopecians are generally humble, sensitive, kind-hearted and genuine because they understand and they care for others.

I cannot promise or dare to say that you'll be alright! But what I can assure is that you'll never going to be alone in this journey of alopecia, its not a all rugged and mean journey. It is a journey that will build you spiritually and strengthen you emotionally. Do keep us updated even if you're still feeling not good, at least you're not alone here.
Take care, God bless
jt

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