Alopecia World
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New here, questions, opinions please. :)
Hi There,
I joined a couple of months ago and have been kind of quietly checking things out but now feel comfortable to post here. Here's my story in a nutshell.
I noticed a small spot around my crown in April of this year and within 6 or 7 weeks it was about the size of a lemon(weird comparsion? lol). While I knew deep down it was AA as I was a hairstylist for a handful of years and know all about conditions of the scalp, I needed a disgnosis. Low and behold it was AA. I got my first injections, and almost immeadiately the hair loss stopped. Evenetually some hair started growing back from the middle of the spot out, and I continued to get injections every 6 weeks. During the summer months I was very hopeful as everything seemed to be working, I just had to worry about hidding the spot. about 12 weeks ago I noticed spot a towards the very front of my head that fell out quickly(weird, its actually two spots in the shpe of racing stripes). I got in as soon as I could to get injections here, and the hair appeared to stop falling out. In the meantime my original spot became active again, falling out rapidily but not in a clean manor more just diffused in the area(uuugh). This last Friday I went in for injections in both areas, but just last night I noticed a small perfect circle in the hair that had grown back. I still have enough hair to keep both of these spots covered, but who knows for how long.
Where I'm stuck right now is balancing between hope and acceptance. I want to remain positive about this and continue to hope that my hair will grow back. However If this gets to the point where I can no longer hide it and have to deal w/ ith telling more people/wigs etc., I don't want it to be a complete smack in the face. I want to start preparing for the worst, but I find that depresses me. How did any of you deal with this without becoming a complete sad sack?
Another question I want to bring up is geared towards women/men in the beauty/styling industry. I would not consider myself an incredibly vein person, but I have always taken pride in my looks and my ability to do my makeup and hair. So much so that I became a hairstylist/cosmetologist(oh the irony!). I am no longer doing hair, but I am still very much in the beauty industry. I am constantly surrounded by above average women(conventially speaking). As a normal woman I sometimes compare myself to these gorgeous women as is, and now I have to deal with the fact that I'm losing something that has always been part of my femeninty. For those in the beauty industry how do you handle dealing with the lack of something that by society's standards is part of being "beautiful"?
Would love to hear from you ladies/gents. Thanks so much!
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Comment by Alliegator on December 5, 2012 at 10:32am
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Hi,
I think a lot of us on here are stuck between hope and acceptance. I think it is okay to be sad about it. Experiencing hair loss is like losing a part of yourself so you have to go through the stages of grief. I think that you can gain acceptance and still have hope for the future. One positive thing that you could focus on about AA, is that your hair can come back! There are people out there like myself who have permanent Alopecia. I have AGA, and I won't ever get back the hair that I have lost unless they come out with a cure. I have accepted that fact as much as I can, but I still hope that one day there will be a cure for men & women.I agree with Stephanie... remember that true beauty comes from within! You can learn to be confident with hair loss. Just take baby steps. You can get through this! You are not alone for sure. And just remember that you have options if you are tired of your bio hair. Wigs can be a lot of fun, and there are many kinds available at all price levels. I love wearing hats & scarves too. I also go out bald, and being bald isn't so bad! Bald is beautiful too. Hang in there!
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Comment by Katelyn on December 5, 2012 at 12:34pm
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Thank you all for your responses. I am so thankful to have stumbled upon this site as it has been so helpful already. A common source of anxiety I've noticed among others that I think is the biggest issue for me is the not knowing. If I knew I was going to lose all of my hair, I'd go ahead and tell all of those that matter and start moving on. I feel like I'm stuck in limbo right now. It feels almost like being in an unstable relationship. One day you're taking my hair from me, the next you're being nice to me. Hard to move on when you're still in it ya know? Anyhow I see so many of you beautiful women on here that go with or without wigs and I know that eventually with time I'll be in a more accepting place with all of this. Like with anything difficult in life the adjustment period is the hardest. I've been adding new mantras to my life that I remind myself everyday, so far my favorites are "You're not helpless or hopeless" and "Be YOU for YOU" :) Thanks again, you all are very lovely.
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You're welcome. This site is great, and it has been so helpful to me as well. I know what you mean. It will take some adjustment. Yes, with time, you can get to a more accepting place in life. Those are great mantras! Sounds like you are already on the path.
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Comment by Tracey on December 5, 2012 at 8:35pm
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I've a similar story to yours (I am in a wig at present)... My advice: get support (I saw a counselor for a spell), get a "worse case scenario" plan so you can have some feelings of control (for me, it was meeting with a wig seller and making a selection to have waiting in the wings), don't let the rest of your looks go (diet, etc.), and give yourself permission to mourn so you can move past the grief. Brighter days are ahead. :-)
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Tracey,
Thank you for your response. That is great advice. I have found a great counselor that I plan on seeing after things calm down from the Holidays. I think having a wig idea that I am comfortable with in mind is also important if it comes to that. While it's easy to get down and neglect certain things like your diet, If I'm going to lose my hair I'm still going to be myself. Fit, and healthy! I must say there is something slightly exciting about experimenting with wigs as I'm getting so tired of trying to deal with my own hair at this point. Seeing it as an accessory rather than something to help you "pass" as healthy, I think can take a lot of the stigma away. I wish you peace with your journey through this. Thanks again :)
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Comment by chris for hair on December 8, 2012 at 11:00pm
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Beauty is such a subjective thing, what is beautiful to one is not to another. Find out what makes you feel good, then follow that. If you like who you represent yourself as, others will also find you beautiful. As a salon owner also, I know that I am happiest when I represent my true self and don't fall victim to what others think.
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Thank you all for your responses. It will take to time to find my "new" self but your words have all helped. :)
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Comment by Abooie on December 14, 2012 at 8:45am
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I understand how you feel (I think we all do) when I first joined I was told nothing could be done for me and tht I wasnt getting my hair back. That was 2 months ago and now thanks to the love and support of friend, family and people here I've gone from hiding my hair under a scarf to shaving and going out in public bald. It's just a matter of those baby steps. I really hope you get your hair back but remember that everything happens for a reason :) xx
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Comment by Jill A. Lane on April 4, 2013 at 6:01pm
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I honestly think if you look in the mirror and focus on the things you like about yourself, you will feel beautiful and confident! And confidence always shines through. If people see that you love yourself and embrace the way you look, they will love it too. I used to try to hide my spots and would get so nervous when anyone would ask about it, and would cringe if I heard the word "bald" at all. Now I try to talk about it as much as possible! Making alopecia a known and open thing to talk about helps take away the stigma of being bald. Plus you will always get attention! Certainly not blending in to all the other girls when your scalp is gleaming haha. I tell myself that I OWN baldness, I don't let it be something I'm ashamed of.
Of course, all of this is easier said than done! But I truly believe having alopecia has made me a better person, and made my life more interesting, that's for sure!
Hang in there! :)
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Great comment Jill, I agree that hair loss should not be something to be ashamed of. My experience is that when I choose to like something about myself, others respond positively also. In my own case I choose to wear hair, but at the ranch where I board my horse we also have a woman that chooses not to. Other boarders have expressed positive comments about both of our decisions. I believe that any time one stands strong, good people will admire them and the not so good ones make unnecessary comments.
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