Alopecia World
www.alopeciaworld.com
Love being bald?!
Its amazing how one simple act can alter ones perceptions of everything. And who would have thought that such a act would have such an impact on someone like me. I remember distinctly how I felt before sept 3 2010. It was my greatest fear. Thinking back to 2 years ago, I can still feel that overwhelming fear. 2 years ago I was facing my second bout of actually being bald. I was once bald as a 8 year child. And it was the worse thing that I endured. I suffered from bullyings, thinking that there was something wrong with me, to enduring people thinking that somehow it was my moms fault or my own. The doctors had no answers, the only thing I remember being told was that I was over stressed. Sounded completely ludicrous that a 8 year little girl would be so stressed as to cause hair loss. Being a shy child this didn’t help much. Eventually my hair would grow back, but those thoughts stuck with me for years, even into adulthood. In my mind there was nothing worse than the idea of being bald. I remember bargaining, asking for anything but being bald. I would have rather be dying of cancer than to go thru that again. If I was completely honest with myself during that time, I was so scared of being bald that I would have preferred death. It wasn’t til I found others that were going thru what I was that I finally had an outlet for my emotions. I found a network of people that I didn’t even know exist. I was able to talk with those that were both knowing what I felt like and those going those the same emotional struggle. It was that, that I finally turned a corner of such. I still remember my first comment on the chat window “help me……” But not willing to let anyone in on my life, not even those that fully understood, I quickly logged off. I didn’t want to hear an answering reply. Slowly I would share my thoughts and feelings and very slowly I started to feel better. I was no longer alone. Many tears were still shed as I came to terms with what was happening to my body. I still hadn’t shown anyone my degree of loss of hair, I still felt too much shame. The only one that ever saw the extent of my hair loss was my doctor. Every 6 weeks like clock work I went to his office and experienced the painful injections. Every 6 weeks for 10 years I did those injections, and lotions and potions. Not only was I suffering emotionally but physically as I put myself thru the treatments. That ultimately didn’t work. There wasn’t a day that went day during those years of treatments that I didn’t cry, or get so angry at the world.
Then came the day that I knew would eventually come, aswell as the day that I dreaded. I would become bald by my own hand. I shaved the very hair off my head. In that act everything altered. Not only did I let go of my hair, but I also let go something bigger. To put my finger on that something is something I still have difficulty describing. The profoundness of it still boggers my mind. Its more than anything physical. Its a way of thinking. Its a letting go of negativity, a letting go of things out of my control, and concentrating on what is important. Concentrating on the important things in my life, the physical, the emotional, and the intellectual. It was also shortly afterwards that I found a book about the Dalia Lama. And in there I found similar thoughts of letting go and holding on.
Is being bald the answer or was it the act of being bald that holds the answers. I would like to think its the letting go, knowing that the hair loss was something I couldnt escape. But by the act of picking of the clippers I took back a little bit of myself. And also coming to the realization that hair or lack of wasnt going to change who I was underneath. Being bald has allowed me to express myself fully, its a releasing of a curtain of my life. And for that I wouldnt want my hair back for anything. I find myself more forgiving, understanding and less judgmental. Im open to trying more things, doing more and just living. Taking chances. Because of the lack of hair?? Or what its taught me. Either way I know where I stand now in this world. And Im getting closer to what I want out of it. And its more than just living it. Its thriving in life. To make an impact.
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Comment by Bald and Fabulous AKA Terri on September 10, 2012 at 8:29pm
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I would disagree. This site is more than just hating hair loss. It's about having the initial common ground of a unpredictable, shame inducing disease. This site allows those going thru this disease in all its stages to share our thoughts. And if that means thanking alopecia and the hair loss for what it can teach us. Not unlike any other disease in this world. For embracing our baldness and wanting to make a difference in this world. Or like I also experienced in my own journey .. hating this disease. Then there will always be a home and need for this website
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Comment by Tallgirl on September 10, 2012 at 10:06pm
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It is also a place for those who have gone through it to be able to give to someone else in knowledge, resources, perspective...or a place to find how alopecia is viewed in other lands, with novel attitudes not found at home. It allows us to find others who, at some point or for years, experienced the ramifications of hair loss with relationships, fashion, employment, sports, performances, parenting and supporting significant others. Here, we can say to ourselves, "Wow. I hope I never become as bitter as ______________ (pick a name)," or "What a fun attitude ____________ (pick a name) has about life!" Examples abound here, where they might not, even in one hundred years, in our own towns.
I think people who LOOK for a website are still HOPING to find a cure or solace, but discover so much more and grow in new ways (some even with new friends!) after communicating and reading on AW for awhile.
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Comment by LilyBell*Murphy'sLawLuvsMe on September 10, 2012 at 10:40pm
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I do not like having hair loss. In fact I hate it. I have hated it from the moment I realized it was happening. I do not hate it any less now. I do not accept it anymore now. It has not made me a better person.
I was and am a good person. My core values are the same as they were before I started to lose my hair. It has affected my self esteem - it has made me invest a slam fortune in wigs so that I might look in the mirror and see the same person before this hellish hair loss began. It has made me have to wear wigs that are hot and uncomfortable at times.
It is not that I lack courage to go bald - it is that I do not like how I look bald. I, even at 49, work hard to look good. I diet, I wear makeup, I use sunscreen, (before a series of illnesses I worked out at least 5 times a week), and I wear hair. I did those things to feel good about myself and to be honest because I liked how attractive men looked at me. I look years younger than I am - when I wear hair - without it I look like an alien.
I have no desire whatsoever to be stared at in public. I do not desire to have to educate someone about why my hair is falling out. I want to feel exactly as I did before this happened but that is impossible because I do not look 'normal'. I can however wear hair so that I can come close to that feeling of normal.
If losing my hair some how would make a stronger person - well then I will take a weaker version of myself WITH hair!. I have been forced to 'become stronger' when I had cancer - I do not like to be forced into anything. I like to make the choices in my life. Cancer robbed me of several choices but after it was gone - I returned to being me. When I wear my wig I feel like me - or close to it.
Some may think I am shallow or vain. I care not what those people think. I am me.
I respect that become bald may have opened your eyes to certain things and made you expereince life more fully - to me it has just been a royal pain in the ass.
Sometimes I read blogs and discussions and frankly think some on here are a taco short of the combo platter. That is just me being honest. I am sure others read my stuff and think not so flattering things about me. Such is life.
For example I would NEVER make fun of my hair loss to others. The ole I will make fun of myself before they do - is not an attitude I wish to adopt. I do not find my hair loss to be a form of amuzement to myself so why would I want it to be to others. I don't laugh at someone else's physical deformity - don't laugh at mine. And yes I view my own hair loss as a physical deformity, a disease, fortunately one that is not fatal, and can be concealed.
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@LilyBell. I'm sorry you feel this way. And you feel you can't be "normal" without hair. I appreciate how anyone would love their hair and want it back. Many times I wished for my hair too. For me, I also appreciate what I have learned thru this disease. To finally let go and experience the release and relief of not worrying about bald areas or hiding my baldness has allowed me to see, as a society we put way too much emphasis on is considered "normal" or "beautiful". It's all right to look different. and be unique. I'm saying this not only in means of baldness but in all aspects. Put on a bright blue Katy Perry wig if it what makes you happy and makes you feel beautiful. Just don't put on an image because society expects it.
@Tallgirl. I couldnt agree more :)
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Comment by Judy on September 11, 2012 at 12:53am
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Terry, I absolutely LOVE your post! Your profile pic is beautiful! As I am very new to this, I'm having to adjust quite quickly and have days when it's very hard (still trying to figure it all out)! After having no previous hair loss in my life (other than very little, after I gave birth to my girls...all 3 of them), I am now faced with "very rapid alopecia"...at least that's what they (doctors) all agree on! At the end of this month, it will be 5 months since my "nightmare" began, when finding the first "2 spots". Now with over 50% gone! I will not lie, it has been a very difficult journey! I've had test, after test, after test and personally, I am very happy that it's "just my hair"...and NOT my health! Especially for my girl's sake! It has changed my entire family and...all my friends lives, for the better...especially my girl's. I was so tired of my daughters always looking/obsessing over the girls/women in the magazines/tv, because NO ONE...is perfect, although some can PRETEND to be! I'm sure everyone on this site did not begin this situation thinking "YAY"...."so glad to be losing my hair", but it is wonderful to see how strong you are...as well as, many of the other people on this site. I so hope to be as confident as you...someday maybe! I look at your post, as well as, some of the others and think, I CAN GET THROUGH THIS and...I AM NOT ALONE! I personally, am very grateful for this site!!! I have always been a firm believer of..."it is, what it is!" For reasons I do not yet understand, this is the path my life is to go. I can go kicking and screaming (and not live/love...life) or I can just except it, move on, love and APPRECIATE myself, others and all the "new" people in my life...because of this site, but more importantly, because...I'm an alopecian!
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@Judy As Im sorry that you are experiencing the unpredictable disease of alopecia so rapidly, it is wonderful to hear that you are doing well. This site does make a huge difference.
I have and will always say that I do not embrace my alopecia but I will embrace my baldness. And I believe that comes with letting go of what you cant control, to release the negativity. It is not brainwashing oneself into false acceptance! No more than it is to brainwash oneself into a religion. I have learned thru this 29 year battle of alopecia that in the end I love myself enough to not let alopecia control all aspects of my life. It controls my hair, but it does not control if I go out to a party. It controls my hair, but it does not control who I love. It controls my hair, but it will not control my LIFE ! I will not live my life worried about what others think of me. Whether Im lovable or not. That is because I let go of those negative thoughts that held me back in the past. Anyone can do..... you just got to let go. Free fall into life. The proof is in all the wonderful people on this site that are showing it everyday.
Yes of course there will be bad days. Doesnt everyone have a bad day whether you have alopecia or not? Its learning to not let those bad days manifest into something more.
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I think there is also a tendency for some to blame the alopecia for social or professional problems, when in reality, the lost relationships may be occurring from poor word choice, cynicism, weight issues, drug use, condescending attitude, over-zealousness on politics or religion, tendency to gossip or mock others, anger issues, judgments based on physical looks only, self-righteousness, etc. Likewise, those who profess that their lives have improved from EITHER shaving or new wigs may just be gaining the friends by the improved confidence and activity (inner beauty). Smiles draw people to each other. Regardless of the malady or challenge, what matters in friendship is how we speak of ourselves (the biggest selling point. Who wants a Debby Downer?) and how we treat others.
My friend once told me she grew up with a mom who had a shriveled arm, but who put others at ease by speaking first about it and explaining away the awkward pauses so the relationships could continue. My friend became a nurse after watching her mom's good example. I am glad I heard that story during "remission," before my alopecia returned to take my hair away again in my older years. Now, I actually AM drawn to those who can make light of the situation and laugh/cry with me.
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Comment by Mary on September 12, 2012 at 12:20pm
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Thank you all for your comments. As many of you know, I have been publicly bald for over 4 years. I would never say that I love or even like being bald (except when scuba diving, when having no hair is great). I still miss my hair and eyebrows. BUT, I'm basically a pragmatist, and the reality for me is this:
1. I don't have any hair and probably never again will.
2. I'm absolutely, miserably hot in a wig or even, at times, a scarf.
3. I can tolerate being stared at and being asked about my cancer WAY MORE than I can tolerate being miserably hot.
4. So, my only option was to get used to being seen bald and get on with my life.
Once I came to this realization, and started venturing out in public bald, I got used to the "new normal" for me, which is that I'm a bald woman. It's just who I am now, and it's extremely liberating. I wish it could work for everyone. But, I know it doesn't.
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Discussions like this one make me feel so happy. As someone new to the site who is slowly watching my hair leave my head to pile up on my pillow, in my comb, in the drain and in various dusty corners of my house, I'm glad there's a place to find different points of view being discussed and debated with compassion, humour and truth. I'm still figuring out how to handle it and my feelings change regularly. Some days I feel more drawn to one person's POV, and some days more drawn to someone else's. It sure beats being stuck with only my own POV screaming in my head - especially when I'm feeling negative. It's great to interact with people who don't just try to placate me with platitudes. And it really helps to be on a journey to self acceptance with others who are making the same trip.
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Exactly, dmf! By the way, I remember going through the picking up hair in piles all over the house stage, getting more and more depressed every time I saw it, and watching the bald spots get bigger and bigger. I finally shaved it all off and, for what it's worth, I felt SO much better immediately! I felt in control, I stopped obsessing about the piles of hair and the size of the bald spots, and I began to work toward strength and peace with my situation. Check out my earliest photos on my page to see me the night before, and the day I shaved. You can see the peace on my face.
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