Alopecia World
www.alopeciaworld.com
Deep, hard thoughts
I've been doing well with handling everything. I haven't had a horrible case of Alopecia in the last 10 years, until now. When I was in 1st grade I lost all of my hair a month after my grandma died. It started to grow back and it was all grown in in a few years, even though I had some hideous hair "cuts" in the meantime. I wore a wig in 1st grade, it couldn't have been more obvious. Needless to say, I hardly remember anything about my childhood. I only remember about 10-15 memories about my entire growing up until late middle school. I think that I have blocked out everything. In 5th grade I then lost all of it again, a month after my other grandma died. (I obviously am a people person and don't manage losses well). Anyways I have had had on and off again spots ever since then but not so horrible that it couldn't be covered by a hat or scarf or something of that sort.
Then this summer I went to Europe to study abroad with my college. It was honestly the best trip ever. Unfortunately, while I was there I didn't take care of myself like I should have. I drank at least a few drinks pretty much every night and I know that that's horrible and not alright, but before then it was maybe a case of going out and drinking twice a month. Anyways, it's hard to not have fun and get carried away occasionally when you're sending your summer in Europe with your closest friends. I will never regret having too much fun that summer, I just regret the circumstances that have come about since. Anyways after the summer my Alopecia started to get worse, I started losing more and more hair. I started also clinging to God more than ever. It seems that whenever I go through difficult stages of my life I go back and forth between clinging to my creator and just being stubborn and wanting to do it on my own. Not wanting to acknowledge that I need His help, just wanting to try and think it through myself, give myself time to come to terms before I start the battle of fighting for my hair, and my health.
Anyways, I am a junior in college, and throughout my life I have gone through every stage of acceptance, awkwardness, and times where I truly felt and knew that I was pretty. I have never found my identity in my looks, but at times when I've been healthy and have had long thick hair, I have been glad and thankful that I am attractive (not trying to sound conceited, I'm truly not, just trying to be honest). But then there's times like now, when in a span of 3 months I went from having thick dark hair to having zero hair... to having hair that's less than 7 cm long. & It's hard. There's no one I know that has it, if there is it's maybe 1 or 2 people that I've heard about through people that I'm not close to. Other than that I've been on my own. I've been on my own figuring out how to handle it. How to deal with it. Nobody understands. I act like everything is alright, I crack jokes about my wig, I named my wig. My wig is beautiful. But I can't help but feel that THEY HAVE NO IDEA. Just because I say I'm okay, and try and act like I have it all together, I by NO MEANS HAVE IT ALL TOGETHER. I can handle the days when I'm not around people I know, when I'm hanging out at the house, or in a different city, I can handle the uncomfortable sometimes hot, sometimes itchy feeling of wearing a wig, but it's days when I have to go to class and have to see my peers and they wonder why all of a sudden I've gone from wearing hats and thick knitted headbands EVERY SINGLE DAY for the last 3 months to wearing headbands for a few weeks, maybe an occasional hat, and then wearing it completely down long hair and everything, long beautiful hair. I can't explain how many times I've heard "Your hair looks different, what'd you do?" "I like your hair, did you highlight it or something, I just can't pinpoint it" and then the most hurtful" OMG! It looks like you're wearing a wig. Or a weave or something. " yeah that was a fun one to deal with. It's not that I dont' want to tell anyone but who wants to honestly tell 200 of their closest peers and acquaintances their entire life story?
There's times where I can deal, there's times when I cannot. I just don't know how I'm going to make it through this phase. It's hard. It's very very hard to wake up in the morning and find yourself downright unattractive, and then after putting on your wig feeling like you're beautiful again, but knowing that underneath it all you're the person you saw that morning in the mirror. The person with the insecurities and the fears that she's a fraud. That she's faking it to everyone, that she's lying to everyone, that she's having to pretend every second of every day that her biggest insecurity is not displayed in front of EVERY SINGLE person she encounters. It's tough. & right now I'm feeling pretty broken.
Then this summer I went to Europe to study abroad with my college. It was honestly the best trip ever. Unfortunately, while I was there I didn't take care of myself like I should have. I drank at least a few drinks pretty much every night and I know that that's horrible and not alright, but before then it was maybe a case of going out and drinking twice a month. Anyways, it's hard to not have fun and get carried away occasionally when you're sending your summer in Europe with your closest friends. I will never regret having too much fun that summer, I just regret the circumstances that have come about since. Anyways after the summer my Alopecia started to get worse, I started losing more and more hair. I started also clinging to God more than ever. It seems that whenever I go through difficult stages of my life I go back and forth between clinging to my creator and just being stubborn and wanting to do it on my own. Not wanting to acknowledge that I need His help, just wanting to try and think it through myself, give myself time to come to terms before I start the battle of fighting for my hair, and my health.
Anyways, I am a junior in college, and throughout my life I have gone through every stage of acceptance, awkwardness, and times where I truly felt and knew that I was pretty. I have never found my identity in my looks, but at times when I've been healthy and have had long thick hair, I have been glad and thankful that I am attractive (not trying to sound conceited, I'm truly not, just trying to be honest). But then there's times like now, when in a span of 3 months I went from having thick dark hair to having zero hair... to having hair that's less than 7 cm long. & It's hard. There's no one I know that has it, if there is it's maybe 1 or 2 people that I've heard about through people that I'm not close to. Other than that I've been on my own. I've been on my own figuring out how to handle it. How to deal with it. Nobody understands. I act like everything is alright, I crack jokes about my wig, I named my wig. My wig is beautiful. But I can't help but feel that THEY HAVE NO IDEA. Just because I say I'm okay, and try and act like I have it all together, I by NO MEANS HAVE IT ALL TOGETHER. I can handle the days when I'm not around people I know, when I'm hanging out at the house, or in a different city, I can handle the uncomfortable sometimes hot, sometimes itchy feeling of wearing a wig, but it's days when I have to go to class and have to see my peers and they wonder why all of a sudden I've gone from wearing hats and thick knitted headbands EVERY SINGLE DAY for the last 3 months to wearing headbands for a few weeks, maybe an occasional hat, and then wearing it completely down long hair and everything, long beautiful hair. I can't explain how many times I've heard "Your hair looks different, what'd you do?" "I like your hair, did you highlight it or something, I just can't pinpoint it" and then the most hurtful" OMG! It looks like you're wearing a wig. Or a weave or something. " yeah that was a fun one to deal with. It's not that I dont' want to tell anyone but who wants to honestly tell 200 of their closest peers and acquaintances their entire life story?
There's times where I can deal, there's times when I cannot. I just don't know how I'm going to make it through this phase. It's hard. It's very very hard to wake up in the morning and find yourself downright unattractive, and then after putting on your wig feeling like you're beautiful again, but knowing that underneath it all you're the person you saw that morning in the mirror. The person with the insecurities and the fears that she's a fraud. That she's faking it to everyone, that she's lying to everyone, that she's having to pretend every second of every day that her biggest insecurity is not displayed in front of EVERY SINGLE person she encounters. It's tough. & right now I'm feeling pretty broken.
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Comment by Jenna4 on April 13, 2010 at 9:07am
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Hi Tara, your story sounds a lot like mine as far as going from having thick beautiful hair to hardly any in the span of only 3 months. I used to get compliments on my hair almost daily, then I had to start wearing it up to hide my spots and it kept getting thinner and thinner. Finally i purchased a wig when I couldn't hide the spots any more. And I still get compliments on my "hair", but I too feel like a fake.
This is my first experience with alopecia and I've had to learn to deal with it quickly. I practically live on this site reading through all the blogs, discussions and looking at all the pictures trying to compare myself. I have found so much support and inspriation from the people here. I don't know anyone with this, didn't even realize there was such a thing until I got it. I read on this site that it is the disease that no one knows anything about, but millions have it.
I know what you mean when you say that your wig is beautiful but you feel like such a fraud! I get so many compliments on my "hair" and laugh inside because they have no idea it's a wig...how can they not know? But I am thankful for that. I won't hide the fact of my alopecia if asked or confronted, but I'm not ready to volunteer it either (at work). In my personal life, I'm okay with it...I didn't cause it, can't do anything about it, so I am starting to embrace it. It is who I am now...this is what God wants me to have for some reason. He obviously felt that I am strong enough to handle it, He must want me to do something with it. I'm still finding my way to total acceptance, but I know i will get there.
You are still beautiful with or without your hair...the beautiful light of your personality will shine through if you let it. It must be tough being on your own and having to deal with this...my husband has been such a support for me. Hopefully you can find the support you need here on this site. Don't be afraid to reach you, because once you do you'll see how many helping hands are there to reach back and give you what you need.
Just take it one day at a time and know you are strong enough to handle anything God gives you.
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Comment by Nadine E on April 13, 2010 at 12:48pm
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Tara - what a great post! Thanks for sharing your story...I can totally relate.
I also find it particularly tough going from headbands and hats to one day wearing a beautiful wig. I recently 'came out' about my alopecia to my friends and family, and while some were weirded out, most have embraced it. Now when I wear my wig, I don't have to worry, because they know it's a wig and don't mention it. Not that my approach is for everyone, I just mean that it helped for me! In these situations, it's tough to know what to do - and it's very brave to share your story with us. I completely agree with Jenna's comment above - you are still beautiful with or without your hair!
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Comment by Devin on April 13, 2010 at 7:51pm
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Hi Tara, I know what you mean about telling 200 of your closest peers and acquaintances because when I first lost my hair I couldn’t hide it so everyone new, but I worked in a factory so if I wanted to go to the bathroom I had to cross a factory floor of about 500 women who couldn’t leave their station so they would ask me what’s up with your hair? I would tell them the whole story and answer all the normal questions and then walk five feet and the next person would ask the same thing. Man was I sick of telling that story it wasn’t even being embarrassed it was just having to field the same questions a thousand times.
I really like what you said in your final paragraph. I’ve never thought of how you can feel like you’re lying to everyone or that you’re a fraud, Isn’t that strange because anyone else with any kind of medical issue probably wouldn’t think of it that way. If someone always wore a long shirt because of a scare on their stomach they wouldn’t feel like a fraud or that they where lying. This is a strange disease and Im sorry that you’re feeling so down, but by the looks of your picture you are a beautiful girl. Just think about how much harder it would be if you where ugly like some of us before we lost our hair…ha-ha. Also you have a whole world of people to vent to hear at AW.
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Comment by Tara on April 13, 2010 at 8:28pm
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Thank you all so much. Your words and thoughts are very encouraging :)
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Comment by Clara S. on April 13, 2010 at 10:09pm
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Hi Tara, I went through the same thing too, the first time alopecia started to get really, really bad for me was 2 years ago and I lost so much hair I had to wear hats everywhere I went and then eventually a wig. It was hard the first time because I felt so much like a fraud. People loved my wig and thought it was my real hair and I never told anyone except my best friend. Then my hair grew back in bits but I lost it all again in the last 6 months and had to wear wigs. I got fed up and shaved it off and since then, been really open to people (only if they ask) and all my close friends know for sure because I shared (even though it felt like i was repeating the same story 100 times over). And it's been so liberating since then because I don't feel like I need to hide or be ashamed of alopecia. It's not something I can control but I can definitely control how I choose to handle it.
Thanks for sharing your experience Tara, this was a good blog post and I hope you know you're beautiful even without your hair! It can be tough and all wearing wigs (totally relate with the being hot etc and I live in a tropical place) but just have fun with it :) I am, now that i'm so open and it totally helps me. I love being able to change it up.
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