Replies to This Discussion

Permalink Reply by Debbie on October 12, 2008 at 5:15pm

It's so hard to know what to say. I've had it 8 years and I'm still so damn mad about it. Summers suck. I get hot with the wig. I haven't told everyone, so I look strange with just a cap or scarf on. I'm not ready to tell certain people, but I found that the people I do tell are so sympathic. It's like they can feel your pain. They don't make you feel funny about it at all. Actually, they don't care either which way. Meaning, I didn't change in their eyes at all.
I guess the only thing I can say is that we have to be thankful that we are not sick. I always say, if there's any autoimmune disease out there to get it's this one. Not that it makes me feel a whole lot better, but it does help.
I think the thing that surprised me the most is that it actually all fell out. Who would have thought that I would need a wig. It took 2 years to come out that I didn't think it would happen. Also, the fact that it's been so long. I thought this would be a phase and it would come back. Well, it's 8 years later and it's worse than before.
It's very emotional. Some days are better that others. Let's just hope we get more good days than bad.

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Permalink Reply by Celeste Edwards on October 13, 2008 at 8:53pm

Hi Tim!

Here's a couple of ideas ... I don't know if it'll "work" for everyone, but just ideas and suggestions on what has helped me (at least on my good days).

1. Keep a Gratitude Journal. No matter how pitiful an entry ... Find SOMETHING to be greatful for!!
2. Keep a hair loss jorunal. This is where you can get mad & pissed off and let it all out!!
3. Music heals the soul!! Not the sappy stuff either!! Download the "pissed off" I'm not going to take it songs! Download the Get off your Ass and MOVE songs!!
4. TALK!! Your loved ones LOVE you with or without hair!! Don't alienate yourself! Open up!! You'll be surprised at the support system you NEVER knew you had!
5. Get involved to help find answers!! Let your anger fuel a cure!! it's better served that way!
6. Find networks of people that are dealing with this too!! That's when the ALONE feeling diminishes.
7. Honestly, try on wigs!! Call around!! Hospital boutiques are FULL of people who are NON-judgemental!! WOW! Talk about support!!
8. My when "all else fails plan" ... Adult beverages and a hot bubble bath does wonders!! Tomorrow's a NEW day!

Emotionally speaking I have two issues ... Both times I felt like i lost myself! I know NO ONE in my life thinks of me and my hair as the "person" i am!! But WOW!! I must have!! I honestly felt like I was (and some days still) dying a slow death with every handful of hair that fell out!! I joke that If I could control NOTHING else in my life, I always had good hair!! Honestly, I know for me it is a HUGE control issue!! I can't stop it!! i can't make it come back!! there is NOTHING I can do but accept it!!

My second isssue is that i am having to do this AGAIN!!! See, I went through this a year ago and ALL of my hair came back!! ALL OF IT!! until 2 weeks ago and out of No WHERE I am now losing ALL of it this time!!!! So, I was NOT prepared!! I thought I had BEAT this DAMN DISEASE!! Now I feel like a fool! Like a hypocrite! AND I am MAD as Hell!! ALL of these things are normal!! And NOW I know!! It's ALL a learning experience!! Somedays I have to just let it out! I have to cry until I have NO more tears! Other days I have to shout curse words for NO apparent reason! Other days, I am happy!! i have AMAZING friends! Old ones and new ones!! and i will NOT let my hair determine my worth! It doesn't define me! It isn't my heart and my soul!!

Hope i gave you some ideas and a starting point!! Good Luck!!
C

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Permalink Reply by Jude on October 14, 2008 at 12:42pm

Hi Tim

What surprised me most about alopecia was that it revealed strength in me to cope that I did not know that I had. Like any loss it was painful - there are times when I've felt very self-conscious, unattractive, humiliated etc.

But I guess like any major life-changing event (illness, unemployment, bereavement) - it throws up the possibility for change, for new ways of doing things. So the emotional impact doesn't have to be all bad. I think before I was stuck in a bit of a rut - the alopecia (and various other life-events) have made me think a lot about my values, and what I consider important in life. Being a reserved person it has forced me to be more open and more confident as I feel my personality is now far more important than my looks. I think it's also made me much more appreciative of the things I have.

I hope this is helpful.

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Permalink Reply by Kristen Ridenhour on October 14, 2008 at 4:17pm

I think what surprised me the most was other people. My family and close friends were beyond supportive when my hair fist started falling out! They didn't let my lack of hair change their opinions or views of me at all. They loved me just the same when I could not look in the mirror with out breaking down and wondering how anyone could ever love me. I was also surprised at how there seems to be so many people out there that associate a bald woman with cancer. Even if they didn't say anything to me at first, there are people I know that thought I had cancer until I told them otherwise. I've found that there will always be that one person who can't seem to get it past them that I AM A NORMAL PERSON, that I'm not sick, and that I'm happy with who I am. They are just going to keep judging and sometimes its just best to let it go. There are better people out there that I can associate with.

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Permalink Reply by kastababy on October 14, 2008 at 7:37pm

Honestly? What surprised me the most about AA was becoming an adult and losing my first boyfriend because my hair started falling out again and he couldn't deal with it, so he bailed. Because I and my family are all optimists, nobody EVER prepared me for the possibility that I would be an adult with AA -- somehow, we just all assumed that I would eventually outgrow it, especially after I was blessed enough to have gone through high school with a full head of long hair.

The best advice I can possibly give is that no matter how bad you think you have things, there is always someone out there worse off than you. I hear the horror stories that my boyfriend tells about some of his inmates that he guards at work, and I know the personal horrors that my adopted siblings have all gone through prior to becoming part of my family, and when I look at it from that perspective, I can only say that AA is minor in comparison. Not only am I blessed, but I am divinely favored to have been given such a means for developing empathy and compassion for my fellow man. Maybe one day my hair will grow back, maybe not -- but no matter what happens, I am truly thankful that I'm not catastrophically ill and that all that's wrong with me is something cosmetic that can be easily covered or camoflagued. (hope I spelled that right!)

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Permalink Reply by Lori M on October 15, 2008 at 2:52pm

Wow since this only just started happening in April of this year I haven't really dealt with it. I think it outright sucks kind of like another nail in the coffin. However like other things that have happened to me I will overcome this and find the good in it maybe not right now but eventually I will.

It makes you atleast in my case want to stay in away from people I know especially while I am trying to get the wigs sorted out. It robs you of your life until you get control of it.

As far as advice goes I would tell them to come to this site. You have to surround yourself by people who are going through the same thing and those you have come through the storm and lead happy lives. That would be my best advice. It is so hard. I mean yes I have a loving husband but he hasn't seen me bald yet. It is one thing to say oh you look beautiful. Yeah but will you still say that when I look like a cue ball? It is him I worry about the most more so than anyone else. I can wear my wig around other people but at home?

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Permalink Reply by Rose Marie' on October 15, 2008 at 4:31pm

Hi

I talk about this very thing to people every day. I look after people with alopecia areata. Everyday I find people have totally different ways to handle things. Myself included. There is no wrong or right way. But there are things that can make this a little easier to move on from.

I don't have alopecia my 17 year old daughter has AU. One of the most important things I needed when my daughter lost her hair was outright honesty about what helps and what doesn't. What are the risks of treatments and what are the benefits. (I had a very forthright and kind derm. this helped me deal with the facts). I needed to know that I wasn't alone and that others are dealing with this and leading full lifes. I needed to know that my daughter and my family would find their way through this. I didn't want people saying to me that this was only hair and to get over it. (I already knew that but that didn't stop my pain and worry). I wanted my daughter to have the right and the ability to present herself as she was comfortable (in her case with a medical prosthesis). I wanted to be able to grieve and rail at the world that this was unfair knowing that I had to find a way through this so that my daughter could be all she was ever going to be, if not more.

Another thing was that I wanted to be supported in my choices and gently reminded when I was loosing my way. ( I didn't want to be judged for perceived mistakes - we all do things differently)

Some of the things that help me and hopefully will help others

EDUCATION IS KEY TO UNDERSTANDING AND MOVING ON. (It is our job to sift through the oodles of information to find the answers that will work for us)

1. I beleive people need to understand the outright truth about this condition early on. There is no cure at this time. Treatments help some but not all and that if you decide on treatments understand they may not have far reaching results of regrowth but can have other medical problems occur because of them. Understand that alopecia areata is for life but remission can and often does occur with no explanation of why.
2. Give yourself permission to grieve always with the thought process that you need to find a way through this.
3. Become proactive with your choices. Do what helps you to cope with this condition. Every choice you make will have consequences. Not to wear a headcovering - you have to deal with the curiosity etc. To wear a headcovering - you have to decide when and what you are going to say to people. The list for these two choices goes on and on. Neither make the fact that you have alopecia go away. It has to be dealt with.
4. Don't feel shamed or less than for having this condition. You did nothing to make this happen, but it has happened so how are you going to deal with it. Don't give this condition negative power over who you are. You deserve more than that.
5. Work on your self esteem and self image at the same time. Making sure self image does not define your self esteem. Self esteem is something you give to yourself. Self image is something you project to the world (not necessarily all of who you are). The latter must not dictate the former. But both are important for the human spirit, we are social creatures. It's ok to want to present yourself how you feel comfortable. Hair/no hair - it's a choice for those with this condition.
6. Help others when you find what has worked for you. This is a very positive thing for both you and everyone else involved.
7. All this takes time - give yourself time to move on but not so much time that you wallow.
8. Talk to those that have found some of the answers and have moved onwards and upwards.
9. If you get stuck and can't seem to find the joy that use to exist in your life - seekprofessional help. Don't think you have to do this on your own.

Hope that helps :) (sorry for the book - I need to get my typing fingers under control)
Rosy

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Permalink Reply by Kristine on April 16, 2009 at 11:31pm

Hi there Tim ! Excellent idea on the informational video. I think it's up to us to put ourselves out there and express to the world what it's like. We in the end have to come to terms and accept it. So it looks like we need to make others accept us.
The thing that surprised me the most about alopecia was - I'm not going to die from it ! Yea !!! And that it is just hair. And that I'm saddened about how many days and months and years I let this "alopecia" keep me from spreading out my so to speak beautiful wings in enjoying life... Just because I was soo consumed with assuming what everybody else was going to think. I am a work in progress with alopecia. I've gotten more confident as time goes on but I do still have my days.
Let me know if you need any models ! J/K - not really.
If I was talking to someone who has just been diagnosed with alopecia the advice I would give them is this -
There is so much more to life than hair. Get comfortable with who you are and what you look like. If you want to wear a wig. By god, wear a wig there are tons of amazing wigs and hats and caps to choose from. Just don't let it consume and define who you are. Get out and shine your beautiful self and noggin. Because Bald Is Beautiful. Tim, I can feel a movement about to take place. Let's let them hear and see us all as is...

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Permalink Reply by George on April 17, 2009 at 7:18am

i think that when it comes to alopecia its an extremely hard subject to speak about. This is because when people try to help me its always relax and dont stress but its not like that because you always have a thought in your mind as to if or when your hair will ever grow back. I think the only thing you can do is just shave it and forget peoples comments and remember that hair isnt the core to your life

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Permalink Reply by JeffreySF on April 17, 2009 at 3:40pm

Hey Tim,

How is the video coming along?

My advice to the newly diagnosed alopecians is to seek support if you are in need and to always remember this disease can turn itself off at anytime so dont give up.
What shocked me the most is that I had never heard of alopecia and that I lost essentially all my hair withen 3 months.

Jeffrey

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Permalink Reply by Lizzie on April 17, 2009 at 6:56pm

Hi Tim,

When I was diagnosed with Alopecia, firstly I had no clue what it was and neither did anyone in my family. People need to know that it can't be helped or prevented, you have done nothing wrong, it's natural, and there are many people in the world with the same condition, I know when I was young, and really until I discovered this site, I felt on my own, because I know they tried but my family never really understood what its like. I'd advise people to get in touch either through this site or another way, with people in the same position.

When I completely lost my hair is when it hit home that Alopecia is not the end of the world, I have lost count of how many times I have been asked what stage of chemo I'm on, and it makes me truly appreciate that I'm not ill, physically I am fine and can do anything.

And finally, vent! make a diary, a blog, a scrap book, a webpage, anything! And just write away. It really helps me to get the stress' of the day down on paper and out of the way, you don't have to show to anyone, or maybe you want to, it's up to you but don't bottle it up, just let it out!

Kind regards,

Liz x

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Permalink Reply by kastababy on April 19, 2009 at 9:44pm

I would say that it's okay to be upset, angry, depressed, sad, and filled with grief at losing your hair -- your hair is an appendage, just like your arm or leg, and it is just as devastating to lose. Despite what everyone around you suggests, your feelings are totally validated as you make the adjustment to being an alopecian.

What surprised me the most is how now, 26 years into the alopecian game, I can still get just as devastated and upset at losing my eyebrows, eyelashes, hair, body hair, etc. just as if I had been diagnosed yesterday. Living with AA is such an emotional roller coaster that sometimes it's all I can do to hang on for the ride....

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