Replies to This Discussion

Permalink Reply by Sarah on March 28, 2009 at 12:12am

Hi Charlotte!

I am currently a senior at the University of Florida. I have had aa for about 2 years now, but I'm getting to the point where I can't quite hide it any longer. I was diagnosed when I was in college, so I cannot say I know how your daughter felt in high school, but I can tell you how I feel living with it in college. I am lucky to have friends that are all very supportive. I have never had any problems with people giving me a hard time, but I definitely know what it is like to be extremely self conscious. Lately, I have found myself not wanting to go out much, because I'm struggling with my hair. I know that everyone says it doesn't matter and that I am beautiful, but it is still hard sometimes. I think that a lot of times, people just want to know what is wrong and once they find out, they are fine with it. I feel that it is often times just easier to tell people exactly what I have if I think that they are curious, instead of them just wondering. This way I feel like they understand more and I feel less self conscious. I get a lot of sympathy for my situation, but I just try to explain to them that it's ok and that I am dealing with this.

I live in my own apartment and I am grateful for that. I feel like this is my own space and I relax without have to worry about anyone gawking at me in the bathroom while I'm brushing my teeth etc. I would encourage your daughter to give a university a try. It's a fun time and a once in a lifetime opportunity. Chances are she will meet great people and they will accept her for the great person I'm sure she is. There are often times many dorm options that she could consider. There are some where they are set up like suites and shared between 3-5 people. Each person has their own individual room, there's a common living area, and there are generally 2 bathrooms to share. This may make it easier for her, because she would not have to worry about taking on the entire dorm floor when heading to the bathroom or hanging out in a common area. Roommates often become quite close and can end up being really good friends.

I hope this helps! Living with aa in college isn't always easy, but it's doable (especially when you surround yourself with good people)! =) Good luck.

Permalink Reply by Brittney on March 28, 2009 at 12:50am

Hey, Charlotte! I agree with Sarah, even if she is a Gator! Haha, jk, Sarah! I graduated from FSU last spring, and lived through every emotion you describe of your daughter. About three weeks before my senior year of high school, I went to get my hair cut and high-lighted. To my surprise, my hairdresser noticed a bald spot about the size of my fist on the back of my head. This was August, and by Decemeber, I shaved off the last 3 strands of hair I had left. I started applying to colleges right around the time my alopecia started, in August, and I was so excited about going! I figured my little patch would grow back in no time, and I'd have nothing to worry about. When Thanksgiving came, and I barely had any hair left, I got a knot in my stomach at just the thought of going away to college. I didn't want to go back to high school after Thanksgiving break, let alone move away to some huge university. But, my parents pushed me. When I cried to my Mom and Dad to let me stay home, they wouldn't let me. Instead, they contacted all of my teachers to inform them of what was happening, and they all were so wonderful with me through the whole process. Not to mention, I had a great experience with my friends and school mates; didn't have to deal with any nasty comments. But anyway, my best friend since 2nd grade decided on FSU, and I decided to go there and join her. We agreed to room together, and I have to tell you, I don't know what I would have done without her. See, it's a different situation now. I've had Alopecia Universalis for about 5+ years, so my level of confidence and acceptance is much different. If I had to room with someone now, I'd walk into the room and say, hey, just want to get this out in the open, I don't have any hair. This is a hair piece, and I have alopecia, etc. I'd probably make some funny joke, let her ask questions, and be done with it. 5 years ago, there wouldn't be a chance in hell I could have done that. So, I'm torn as to what advice to give you for your daughter, because I know exactly what she's feeling. But, then again, if my parents didn't push me, I would have missed out on the opportunity of a life time! College was the best 4 years ever, and although I was scared as heck when I went, I wouldn't give that time back for anything. So, when my best friend and I decided to live together, my nerves settled a bit. But I was still scared of ol' dorm life, and those darm community bathrooms I was going to have to conquer. But, I somehow got through it. We actually signed up late for on-campus housing, so we were way down on the waiting list. We got stuck in a coed dorm, community bathrooms, without even a sink in our room. I've learned since, that you can go to student housing and let them know of your daughter's condition, and she can have priority, and hopefully get into a room with a shared bathroom, like Sarah was describing above. Whether your daughter ends up living in a dorm, or in an apartment by herself, I definitely think you should encourage her to go away to college. It's such a different environment living in a college town, as opposed to being at home at a community college. She will be exposed to such a great diverse group of people, will have the time of her life, and conquer the game of beer pong, haha! Is there a college where some of her friends did go to after college, that she could choose to go to? That way, she wouldn't be all by herself. I think that would be very helpful! And let her know, that as scary as it is to tell people about her condition, the looks are really just out of curiosity. It's like when you're driving down the street and there's a wreck on the side of the road, you forget about it as soon as you drive by and find out what happened, but for some reason, you just had to slow down your car to look. That's the same thing with people and alopecia, they're just wondering what's up. And not that it's any of their business, but sometimes it's just easier to let them know. There was a girl at my school that I would see from time-to-time, and she was completely bald. I don't know what from, but nobody even took a second look at her. I was like, wow, that's awesome, good for her! Sometimes, our fears are all in our head. And once we get over it, life gets a bit easier. I'm not there yet by any means, but I know I'm much farther than I was when I first when away to college. And I attribute my going away to college to why I've gotten farther. So, I know I've rambled on and on, but the bottom line is that, yes, I think you should push her to go! She'll love you for it later! Let her make her decisions about her housing arrangements at first. But I bet, she'll end up meeting a great group of girls, tell them about her condition, and end up getting an apartment with them the following year! (It happened to me!) It will be the best time of her life!

Permalink Reply by baldmatt55 on March 28, 2009 at 12:27am

I am a 20 year old sophomore in college right now with AU. Now personally, I did some decent research before I went to college and found that the community college was economically the better decision because I found a good enough community college where I'd get the same educationally out of it as I would at the university so the adjustment to the university won't be such a jump, so if community college is what she decides to do in the mean time, there definitely isn't anything wrong with that. And who knows, maybe in this 2 years she can grow out of that anxiety. However, if she's ready to go to that university, my biggest suggest would be to have her talk to some people with that condition. I'm a male so being bald and assimilating into the college society, especially being part of the football team, wasn't a tough task for me, but I would be more than happy to talk about it with her. There are also many people on this site who would be GREAT for our daughter to talk to who are college students in the universities from all over the country who deal with the same pressures she's experiencing right now who would be more than happy to talk with her as well.
God Bless,
Matthew

Permalink Reply by Danielle on March 29, 2009 at 11:18pm

Hi Charlotte,
I am a sophmore at pitt-bradford i have alopecia areata since i was 2 and I know how the transition from high school to college can be diffcult expecially for some one with alopecia but everyone is different when it comes to talking about thier alopecia...all of my room mates have been pretty understanding but i also tell them right up front about my condition...but in all honesty it is up to what your daughter is the most comfritable with because it could also affect her studies...when it comes to housing most schools have single rooms and if you talk to the housing department early they usually take the condition into consideration for housing although you or the doctor may need to fill out some paper work.
Wish you and your daughter the best and she is more than welcome to contact me if she needs too.
Danielle

Permalink Reply by Charlotte on March 29, 2009 at 11:36pm

Thank you everyone for your replies. I'm going to see if she will read this and hopefully she will even join this site. I wish Vanessa was able to be more open about her AA as you all seem. Even something such as joing this site would be a very difficult step for her. Strange thing is many people actually realize she has something as we have lived here since she was in the 4th grade and they have seen her hair come and go. Last year she was finally starting to try and be more honest with people, talking baby steps. Then she was in a serious car accident in October which she is still in physical therapy from, (she broke her ankle in multiple places and her leg bone where it connects to the ankle). and it has kinda set her back. *Sigh* Thank you again for all of your suggestions and experiences, I really appreciate it. :) :) :)

Permalink Reply by Kristen Ridenhour on March 30, 2009 at 3:25pm

I'm currently a junior at the University of Central Florida. I got Alopecia at the age of 14. I spent most of high school worrying about what others would think of me if they knew I didn't have any hair. Luckily I had a group of friends who knew everything and supported me through everything. Going to college is a transition in its self. For the past three years, I've lived with 3 other girls (different girls each year) in either an apartment or an apartment style dorm. If you can find a school that has these, it might make her more comfortable. I think it made it a little easier that I had my own room and didn't have to worry about my roommates seeing me bald until I was comfortable with it. I haven't worn a wig since high school, so it's easy for people to tell that I'm bald, but sometimes it's a little awkward to bring it up. In general, I have found that people in college are more accepting than they were in high school. I do get questions every now and then, but I can't remember any of them ever being rude about it. Usually they are just curious and after they know what it is it doesn't bother them the least. I think you should definitely encourage her to go to a university, but I'd let her make the final decision. Best of luck!!

Permalink Reply by Vicktoria (Katya's mom) on April 2, 2009 at 1:54pm

Hi Charlotte,
Granted my daughter is only 13 but she has had AU for 2 years. She is in performing arts and has had to decide how she was going to handle the wig issue when performing in plays. Initially, she took a break from plays and I could tell that she was trying to work out dealing with AU in her own private way. Most of her friends new since they saw her hair fall out, so this made it easier. None of the kids in her youth theater group knew about the AU. Even though she was generally a happy girl, I could tell that she was avoiding sleep overs, avoiding stage work ect. so we sat down and had a talk. Basically, she was scared to tell people that did not know about the AU that she wore a wig. It was the BIG unknown. My advise to her was that if someone asks, or if you need help with your hair, just let them know what is going on. People are more curious and rude when they don't know. As soon as you tell, it's like a weight lifts, and most people don't really care. We discussed that the AU does not define who she is. She does not have to go up to people and bare her soul. But if someone asks or if she is in a situation were she had to do something with hair, just let people know. The first time she did this, was extremely nerve racking but it worked out just fine. Every time since then has gotten easier. She has now gotten to the point that occasionally, she switches wigs on the weekends so that it's obviously a completely different hair color and style, just for fun. It took about one year to get to this comfort level and a lot of positive reactions when she told people about her AU. If you daughter can't get to this comfort point on her own, I would suggest a cognitive therapist. What a good cognitive therapist will do is teach her strategies to cope. She will not go into childhood feelings or psychological issues. She will just say this is what you have now how are we going to deal with it. Then your daughter can start working on exercises in coping and dealing with the Alopecia without feeling embarassed or ashamed. What we have discovered is the "secret" and the hiding is the most difficult thing to deal with. I hope this helps. Vicktoria

Permalink Reply by Holly Hlavacek on September 2, 2009 at 12:03pm

I am a college student as well and went for two years without any baldness and now I wear a wig to class everyday. I would let her ultimately decide but don't baby her. It is what it is and you can't let a little thing like hair stop you from anything especially your future otherwise you will be cooped up in your parent's house for years! Tell her that she needs to utilize the gift of intelligence that she has been given and quit valuing conventional definitions of beauty. She is much more than that and now has a certain something extra to help stride for doing something!