Alopecia World
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A quick overview of my early experience with alopecia
My name is Nicole and I have been living with alopecia since 2005. It started falling out in the Spring of ‘05 and by December of ‘05 I was completely bald and all my eyelashes and eyebrows had fallen out. I was devastated. I had grown up as “the girl with a ton of hair” my mom had always joked I had enough hair for ten people. So when my hair started falling out I felt like I was losing a huge part of myself. I remember when I developed several bald spots and had lost about 70% of my hair looking at myself in the mirror and thinking I don’t even know who you are. I was really distraught , confused and I kept a lot of it inside to myself. It was hard to talk to people about it because people just looked at me with pity in their eyes and they would say "I feel so bad for you" I didn’t want people to pity me because it just made me feel bad for myself. I felt no one could relate to what I was going through and even the doctors I went to see had very little information for me about what alopecia is and why this had happened. I was convinced there must be something a doctor could do to fix this. I saw several doctors and tried everything to “fix” this from creams, to liquids worn at night under a shower cap (so attractive ), to pills, to steroid injections, to detox diets, I think I tried everything possible to get my hair back and every time my family and I got our hopes up as we saw a little bit a regrowth it would all fall out and we would be devastated. Over and over again. Everything we tried something and it started to work my whole family would get all excited. We’d feel this is it….the cure! But when it all fell out it was so hard. I felt so guilty for getting everyone’s hopes up only to watch them fall. I hated my body for doing this and couldn’t imagine why this was happening to me. Through out the whole experience I didn’t cry in front of anyone. I cried a couple times to myself in privacy but to everyone else I put on a happy face so they wouldn’t feel bad for me.
The last thing I tried was the absolute worst and I do not recommend anyone try it. It’s a cream called anthralin which you apply right to the scalp. My dermatologist recommended using it and the idea behind using it is to basically irritate the scalp so that your body is distracted and fights the irritation instead of your hair follicles. I appreciate my dermatologist trying it but I would never recommend it to anyone it made my scalp from my front hair line all the way back to my crown an open sore . It was completely raw and just unpleasant. I immediately stopped using it but it took a while to heal.
After that I went to see a dermatologist at Lahey clinic in Massachusetts. My dermatologist in Maine referred me to him and said if any one will know what to do it is him, he is extremely intelligent and has over 50 years experience in the dermatology field. I was so excited to see him.... I thought for sure he would have the answer and I would finally be able to get my hair back. When I went to the appointment the doctor came in and explained that Lahey clinic was also a learning environment so there would be several interns observing the appointment and then three you men and 1 young woman came in. I was fine with that until the appointment took a drastic turn.
After going through my file and seeing what I had done with my dermatologist the doctor looked at me and said, “kiddio with all my years of experience I know there is no cure for alopecia, my best recommendation for you is to get a great wig.” I swear I felt the room spinning. I thought to myself “WHAT?!?!? A WIG?!?!?” I thought this man was going to tell he how to fix this alopecia thing. I felt so vulnerable, my dad calls me kiddio so I just felt like a little girl hearing the worst news from my dad. I was devastated, shocked, and completely overwhelmed. He continued to talk but I just kept saying nah nah nah nah over and over again in my head I didn’t want to hear what he was saying because it wasn’t what I had been expecting to hear and it was going to make me cry. I looked up at the ceiling trying to do what I could to not think about what he had just said and to force the tears that were threatening to run down my face back into my eyes. While my mom nodded her head along listening to what he was saying i just kept thinking nah nah nah. I did not want to be rude and I truly wanted to hear what he had to say but I was in an intense emotional state and all I could think was please don’t cry in front of all these people please don’t cry Nicole. I was pretending to listen but all I was doing was holding back tears.... but my body couldn’t stand it any longer! All the tears I had been holding in ever sense this alopecia thing invaded my body burst out. I have never cried like that before in my whole life….my tears exploded out of my eyes….my whole body cried….you should have seen the poor interns they were frozen with a look of “what the heck should I do” the doctor ordered one of them to go get some tissues and the young intern ran to another room and came back with a heaping pile of tissues. I just cried an apologized a million times hoping to some how articulate how silly I felt. I was beyond embarrassed.
That was the worst and best day for me. Looking back I now have so much respect for that doctor because as much as I didn’t want to hear it I needed to know that this alopecia disease was here to stay and there was nothing I could do to fix it except learn to live with it. It seemed like a daunting task at first but once I stopped all the pills, diets and doctors appointments and just started living a normal life I quickly started adapting to having alopecia. I was finally able to focus on living like a normal person and stop constantly focusing on how different I was and how I was going to “fix” myself. I let go of all the guilt I had about having alopecia and I started living.
Now I am at peace with having alopecia. I always say alopecia was both the worst and the best thing that ever happened to me. It has truly made me a better person. I don’t take anything for granted and I appreciate even the small joys life has to offer.
For the first year I had no one to talk to about alopecia, none of family or friends could understand what I was going through. I really felt alone. But I joined a group on myspace for alopecia support and quickly started seeing I was not alone! I talked to several girls who were my age and could relate to pretty much everything I’d been through and all the feelings I had. It was great just to know I wasn’t alone. think websites like this are amazing, and I am so glad to be a member. I am always willing to offer support, advice, and whatever anyone needs. Alopecia can be an extremely devastating process but it really helps to have others who understand what you are going through help you through it! Let me know if i can help in any way :)
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Comment by rj, Co-founder on March 19, 2008 at 8:40pm
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What a compelling story of strength as well as struggle! Thanks a million for sharing. I placed a link to your story on the homepage and here. Keep sharing. You're touching more lives than perhaps you ever imagined.
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Comment by kastababy on March 19, 2008 at 10:15pm
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Wow. Your story echoes mine in so many ways; my hair fell out as a child and being the oldest child and watching the rest of my family go to pieces I also held back how I really felt about my hair loss until just very recently. Like RJ said, keep sharing. Telling the world your story is perhaps the most healing thing you can do!!!
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Comment by Angie on March 20, 2008 at 4:43pm
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Thank you for your story.I'm just starting to finally except my hairloss condition.Your story touched me in so many ways.Thank you again.
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Comment by Melanie on March 20, 2008 at 9:59pm
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Nicole, I know you don't know me but I owe you a huge THANK YOU. I just read your story and feel so much better. I really believe you when you say you are happy person that appreciates life and the people you have in it......my daughter was just diagnosed on Monday, 4 days ago. She is 5 and the sweetest child you could ever imagine. Until the night before I didn't even know what Alopecia was. I feel like I've been hit with the hugest, most shocking news, and I've cried everyday. My husband is the same. She is almost 6 and doesn't understand but we've told her small things. I'm basically trying to arm MYSELF with everything before I know how to pass it on. I still can't believe it and it makes me so very very sad. But stories like yours are GREAT....the peace and acceptance. And I must tell you: I clicked on YOUR story because of how PRETTY you are. You look great. Right now Emma, my daughter, has 4 patches of hair loss and other people can't really see them....BUT I just want to have a plan for anything that could happen. I never ever want her to feel bad about herself so I want to kno exactly what we'll do if it gets worse or too much for her. I want her to love how she looks and have a joyful childhood. So, with that said, what would you recommend? Since I am so ne to this site I'd love it if you emailed me if at all possible. My name is Melanie and my email address is: cmgeiler@sbcglobal.net I would be so grateful for any advice....I'm totally willing to pay any amount of $$ or travel anywhere to get her the best whatever she needs....like I said, she looks great now and we'd be elated if nothing more happened but I've read a lot this past week and don't want to live in fear with no plan, know what I mean? And congrats to you for the wonderful peace you've found! I would say you have something that lots of people with "perfect" hair don't. Anyway, thanks again and hope to hear from you.
Melanie
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Comment by Trina on March 21, 2008 at 2:15pm
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That sounds so much like what I went through. By 15 I was completely bald and it was the worst thing and the best thing that ever happened to me. I did all the treatments, scalps meds and injections in my hip which I think are the reason to this day my menstrual cycle is crazy. The steroids made the hair come back and made me so puffy in the face. When I stopped so did the hair. I decided to live my life and learned to make my own custom made hair pieces at home. I dont pay anyone the talent GOD taught me at home. No one knows that there is nothing there because I learned techniques so I swim, run, and do anything else I want too. The idea is to be at peace within yourself and I know it is hard. My daughter has developed a spot and she has been successful with treatment her hair is growing back in the spot she has. She has been such a trooper at 8. She has taught me about strength and the resiliance to be brave. The Dr's I had were great and never gave me false hope. I went to a specialist at George Washington who really knew a lot about it, but again there was no cure and it came out again. At 19 I said the heck with it and I have been fine every since. I have my days but heck what can you do. God says what doesn't kill you makes us stronger... and heck we here so might as well make the best of it.
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Comment by claire taylor on March 22, 2008 at 12:03am
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i lost my hair when i was 11 and im glad it was when i was young as kids bounce back so i got used to it and have coped well. if i had been just a bit older when u become aware of your looks and hormones kick in maybe mine would be a different story. i can understamd how difficult it must have been when u were diagnosed but u have done well to adapt to this condition xx
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Comment by Katherine Green on April 8, 2008 at 2:42pm
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Just a quick post from me to say, thank you for sharing this with us all, Nicole.
Hugs from me to you.
Cheers
Katherine. x
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Comment by Katiebug on April 13, 2008 at 8:56pm
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Nicole- Thank you so much for posting your story! I'm 22, and got my first spot when I was 21. I then got extremely sick with ulcerative colitis, and now have a few more spots. I was wondering if you had a myspace page so that we could chat? I'm new to this site and haven't really gotten used to it so let me know! If it ever comes to it - I love your hair and eyebrows and hopefully will be able to get something like it! Well, hope to hear from you soon! ~ Katie
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Comment by Yvonne~Yhoney on April 16, 2008 at 1:41am
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Thank you for sharing your story, and I truly can relate and remember how the doctors told me. I thought all of my dermatologists were being cold callous jerks... but the few I saw were only being bluntly honest.
This is just my opinion but, I feel the reason doctors don't spend the time researching alopecia is because there is no money to be made in finding a cure. If medical insurance will not pay for wigs, they will not pay for medicines to re-grow hair. So where do you think the dermatology professionals stand on this issue? (Sorry, I may have gotten carried away on this but it had to be said.)
Anyway... :) Keep doing your thing, inspiring all of us! ~Yvonne
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Comment by Nicole on April 16, 2008 at 11:59am
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I would hope that is not tue but sadly it may be....so many people struggle with alopecia that you would think there would be some sort of cure....we can only hope at some point there will be :)
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