Alopecia World
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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 Caligrl on
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Accepting your Alopecia is a process. Most people will understand and accept you for who you are. If they can't then they don't deserve you. It really does get easier over time. Some days are harder than others. Focus once what you have rather than what you don't have. You are more than just your hair. Feel free to message me if you need to talk.
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Hi Kaleigh,
First of all, you're so pretty and not having your natural hair isn't going to change this, whether you rock a wig or opt for a bald/short hair look.
I just discovered my Alopecia Areata a few months ago and the biggest advice I can give you is to take the time to absorb the shock of losing your hair. Cry if you need to - there's no reason for you to dismiss this. It's a traumatic and frightening experience. It's ok to feel like your world is crumbling and wanting to hide under a rock.
As for your friends and boyfriend - if I were you, I would tell them. If they were to experience alopecia, would you not be understanding and supportive? So you have every right to expect the same from them and keep in mind that their reactions will reveal a lot about what place they have in your life.
Having said that, be optimistic! Don't assume the worst - they could very well be concerned and sympathetic - my family and friends were.
Let me know if you want to talk!
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Kaleigh,
I am so sorry to hear about your news. Last year ALL of my hair fell out in two months. It was very scary. I am 48 years old and had never had alopecia before. I won't lie. I was devastated. It was shocking for me and everyone around me, but what I found in the end was a whole lot of support, a lot of love and a lot of encouragement. It took time to adjust, but what I realized was that it was all about accepting and adjusting. It took soul searching and deep breaths. It wasn't hard for anyone to notice because it happened so fast. My husband helped me pick out a wig and we have since moved on with our lives - me with my wig and new ways of doing things and he with his acceptance of it. Any true partner will love you through thick and thin. Any one of us is subject to any number of negative events that can impact our health or the way we look. Good people know that and will respond with kindness, empathy and compassion. If they do not, then they do not deserve your friendship and love. Take heart my dear, and if anyone gives you grief, be fierce and courageous. Don't let them cast a shadow over all of the rest of who you are. For six months I had a message on my fridge, just to remind me: "I AM NOT MY HAIR."
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Permalink Reply by Alo-mom on
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Our daughter lost her hair very rapidly while she was away at college. It was a very hard time for all of us, but as a mother I really felt bad for my daughter. She seemed to take this with such grace. She lost all her hair in 4 months and that is when the support she needed had to be there.I will never forget when she hinted that her friend was having a birthday party and she said the world "wig". My heart sunk so deep into my chest I could not breath. This was my cue to step in and find that human hair wig that looked amazing and have her continue on with life. Please read my journey to China to find the best human hair wigs possible. Since that time, 6 years ago, I jointed the National Alopecia Areata Foundation, became a legislative person for the foundation, am a phone support person and studied the wig industry and what the best ones are on the market. You must let those close to you in on your condition, you need them more then you realize. I remember my daughter saying to a wig salon owner that she remained strong because we as her parents remained strong and were there for her. Since that time she has graduated college, has a great career and got engaged last week. If you want to talk you can message me or look me up as a phone support person in Indian Wells, Ca with the National Alopecia Areata Foundation. Life goes on after Alopecia, but it is not easy and you are going to need your parents, close friends and your boyfriend. Talk to you soon, if you so desire.
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Do you have any suggestions for synthetic brands? My budget doesn’t allow for human hair.
Thank you
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Rene of Paris, Raquel Welch, Uni wigs. There are many to chose from. I find some run larger than others so make sure you check the measurements for each brands average size. I run small so the larger caps are impossible to get to stay in place. Synthetic is always nice because those are the ones that you can wash the night before and turn inside out and let drip dry in your shower, shake and put on in the morning with no styling. I love the ease of synthetic hair. It saves a lot of time getting ready for work and I'd rather sleep any day.
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Bev, I know this is off Kaleigh's subject, but I would really appreciate your advice about synthetic wigs. I have had two so far. They last five months and look like rats' nests. I try to take care of them exactly as I should - with conditioner and washing - but to no avail. Do synthetic wigs just fall apart at 5 or six months? They look completely frizzed out and terrible. What do you recommend? Thanks so much, and message me if we shouldn't be chatting about this here. :-)
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Permalink Reply by ChiTi2017 on
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There are Futura wigs that are a Blend of Human Hair and Synthetic, its like you get the best of both worlds on a affordable budget-smile
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Permalink Reply by MJ Wrick on
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Jon Renau is my current synthetic. My HRA will reimburse me and if you don't have coverage that will pay for "hair", if you have a written diagnosis and order from your physician, you can deduct the entire cost on your taxes as a medical expense at the end of the year.
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Permalink Reply by hagster on
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You have taken the first step by admitting to yourself that you have AA and somewhat accepting it. Being scared that your boyfriend or friends will find out is a common reaction. But, I (and many more on here) will tell you that if lovers or friends can't or won't accept you as you are, then they are not true loves or friends and you're probably better off without them or treating them in the same way. Ask yourself where your friends would be if you had something more serious. I will take my few true friends I've had for many, many years over my fair weather friends anytime.
My SO didn't blink at much more serious and ugly afflictions in the first 3 months of our relationship, and wasn't phased by my losing all my hair with AU 14 months ago. I prefer scarves and hats over beanies instead of wigs, so when in public people assume that I have cancer. I use it as an opportunity to inform about AA and have even helped cancer patients with headwear. I have even posted on my Facebook page about it and I have never received anything but positive feedback.
I wish you the best in your AA journey.
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I do wear wigs but when I get compliments on “my hair”, I say thank you...its a wig and then tell about Alopecia. In the house, I do wear beanies or cotton scqrves, not because my husband cares, but because my head gets cold. I will probably never answer the door or go outside with my bald head but I do these things with my headcovers.
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