Alopecia World
www.alopeciaworld.com
New and Frustrated
Hi everyone,
I just joined the site and I've literally never talked about my alopecia to anyone before, so this is really scary for me. I've had alopecia areata since I was very young, I think my mom noticed my first spots around 3 years old. I wore a wig in kindergarten, but since then, my hair has grown in completely. I have had a few spots here and there over the years, but I've always been able to hide them and they've always grown back. Not even my boyfriend or closest friends know I have this and I'm so so scared for them to find out. I'm now a freshman in college, and my hair has started to fall out very very rapidly. Ive lost about 40 percent of my hair, and can barely hide it anymore. I know I'm probably going to go back to wearing a wig, but I really just can't except it or deal with it. I'm afraid my boyfriend will see me differently and not want me anymore and that my friends will be scared around me. I just wanted to actually write something and say this (kind of) out loud because I really have no one to talk to about it. Id be willing to chat with anyone, but it's also a relief just to type this out and accept that this is real and happening to me and I need to learn how to cope in a healthy way. If anyone wants to share how they told their friends or significant other about their alopecia, I'd really love to hear about it!
-Kaleigh
Replies to This Discussion
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Permalink Reply by Flwdbaseball on
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Hey kaleigh!
finding out I had alopecia really changed my life but my friends and family are the people who keep a smile on my face! I promise you that your friends will not look at you differently and most certainly your boyfriend will stand by your side. I’m recently engaged and couldn’t be happier even though alopecia has such a big part of me. Talking about it with friends and your boyfriend will also make them realize that it is a tough time for you and they will be there to support you. I come here to read about how others cope and also to get something off my chest that I know some won’t understand so if you ever need anyone to talk to, I know there are so many that would be willing to do that including myself
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Permalink Reply by Cory on
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Kaleigh and All,
My son developed Alopecia when he entered our elementary school at age 4. Lost everything. In the 5th grade he went to another school, newer and built with modern materials. He started getting his hair back. Had a full head of hair entering 6th grade. All of his hair stayed for 7th and 8th grade. Then he entered the old high school in 9th grade and he started losing his hair. We pulled him at Christmas break. He started getting his hair back. The high school was completely gutted and remodeled this past year. He is now in the 10th grade in the high school and his hair is all back. We tried everything and we have heard all the "I'm sure it's STRESS" bs. I am confident that the environment of the two schools had something to do with it. Both were built in the early 60's and both had asbestos. The schools did not abate the asbestos but rather simply covered it up with new materials on top of it. I am 100% confident that the environment that we live and breath in everyday has a lot to do with it. When I read some of these posts I can't help but wonder how old some of the colleges are that you guys are attending. That's my two cents worth and I just feel like I should share my son's experience. Thanks for reading. Cory
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Food and environment may play a part...
But what about our genes? 92% of twins develop same diseases despite living in different environment and eating different food.
Personally am like you a bit... when it happened to me i tried to identify all the causes, I almost became a scientist cause of all the reading.
All the best! Stay strong
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Kaleigh,
I know exactly how you feel. I lost all my hair in high school and felt that I would be looked at differently by my friends and my boyfriend. Just when I began to accept having to wear a wig and having that awful feeling of being constantly "looked" at differently I graduated High School and had to start all over again in college. I would love to chat with you ANYTIME to help you through this. I For me it has definitely helped talking with others who have also struggle with Alopecia.
Five years ago I had to start all over again with those feelings of being accepted by others. Since finding the right wig for me, one that allowed me to live my life, I have now been able to accept my Alopecia. I still have very close friends who have no idea I have alopecia. I was, at times, my own worse enemy with this disease. But now Alopecia does not control me.
If you ever want to talk please do not hesitate.
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Permalink Reply by JRC on
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Kaleigh, your story sounds like mine(although Im now 62).There isnt anything words can make this crazy disease better.....Ive been around the us in studies for this and the one solution that seems to work for me is a prednisone blast (40 mg/day for 5 days and a 5 day tapper down with each reduction in 10mg until you get to 10, then 5-5 and off) results usually started with two weeks.
Talk to your DR.
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Hi Kayleigh
I’m so sorry you have this awful disease. How very brave of you for sharing with this forum. I hope there is some comfort from the wonderful responses you have received. I would echo many of the comments. I have likened my feelings and reactions to this hideous condition as a type of bereavement and we can all be at different stages of that grieving process at any one time. Choosing who is helpful to speak to can vary day to day depending how you are feeling. I reached out to someone whose replies were realistic rather than positive and hopeful and it compounded my panic. I am still at the very early stages of coping with hair loss and the diagnosis of a scarring alopecia and continuously search for hope and positive outcomes. Good luck with everything and keep in touch with the forum x
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Permalink Reply by Mendy on
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I know how u are feeling:((( Mine started 6months and I many times I have been thinking I dont wanna live. I did tell family and friends but I feel like nobody understands what we are going thrue althought all of them were really kind and supportive. I feel like you lost I am watchin people on the street with normal hair and thinking why me:(((( Plus I have accepted I will be alone for reat of my life I am 36 and single it was hard to date with hair now I feel no point without it:(. I got some wig as I could not look at myself but I dont feel good in it as is not a good quality. Does anybody know where I can get a good human hair wig? or if is there any shop in London?
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I love my Follea Gripper! I have tried soooo many kinds of wigs but none stand up to the quality, versatility and natural look like my Gripper. I purchased my first piece 5 years ago and still have it today.
Message me me if you would like more information.
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Thabk you I was also recommend diamond wig by fredco I really want to find some nice wig I can feel ok in. buf that you will check it x
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Permalink Reply by Kimmy Kimmie on
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Hi Kaleigh,
I have not read all of the replies, but I’m sure others have already said that your friends, family and even your BF will not care about the hair loss. I was in the same boat when my hair started to come out. I was embarrassed to say the least...and to be honest I've been married 17yrs and my husband has not seen my actual hair in 9yrs, and I stopped going to the Hair Salon also about 10yrs ago because I felt like everyone would be staring at my scalp. (That us an insecurity that I don’t know if I can get over because my hair was thick and long) I've been rocking wigs and my husband loves the way I switch up my style. My sister, daughter, mother and my BFF knows I have scarring alopecia but I have not had the courage to actually show anyone. I wish I could be of more help with that. But I want to say whether you rock a bald head or a wig I’m sure your fabulous!! If you ever need to talk please feel free to keep in touch with me. I love this forum all of the support helps me tremendously, I don’t always reply but I read it weekly. #YourNotAlone :)
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When my hair thinned to the point of embarrassment my husband told me he loved me and my hair didn't matter. I hope your boyfriend feels the same, but you know, if he doesn't, this would be a good time to find out. You don't need that kind of man in your life if he is too immature to understand. Someone who really loves you will understand that this doesn't change who you are, and remember, it doesn't.
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Permalink Reply by Debwp on
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Hi New & Frustrated,
Sorry to hear of your Alopecia, I am also a fellow sufferer for more than forty-odd years. My AA would appear only at times of great stress, I always went off to a skin speciailist for cortisone injections and my hair always grew back. I am in no way suggesting this is the cause in your case, as on this site I have been lampooned many times for this, so now I simply state that with me it is definitely stress. My first bald spot I can pinpoint to the stress involved with planning my wedding, new jobs, moving house & last bout a few years ago was hugely stressful when a business failed, I ended up with a huge bald spot & numerous others. My hair always grew back with medical intervention & decreasing my stress levels. However, in saying that, last bout of injections worked ( I have now developed craters on my scalp which scared me a lot initially but I found out this happens with frequent treatment.) I hope this is reassuring in some way, you are the same person on the inside, stay strong and I hope things go well for you & maybe this helps you. :)
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