Just wondering, when is the right time to take your wig off? My hair regrew when I was about 25 but then all dropped out about 2 years later. This was actually just in time to coincide with me starting teacher training which seems like it would be terrible but actually worked out because I started wearing a wig again before the school placements and there was no major change for any students to see. It was however deeply disappointing and heart breaking to go through losing my hair again after 2 years of freedom from alopecia.

Anyway that was about 6 years ago and now it has almost completely grown back again. So when is it safe to take the wig off? It’s actually almost easier living without hair because you always know where you stand, you have alopecia, you deal with it and you live with it (I’ve had it since I was 9). But when it grows back and all your friends and family are doing the happy dance, you have to spend your whole time wondering when/if it’s all going to fall out again. And as a teacher, going through that in front of teenage students in a high school is a somewhat daunting prospect.

I have been tempted to shave it all off and continue wearing a wig because then I know that I’m in control, not this pain in the backside “condition”. But what a waste, maybe this is it, maybe it won’t fall out this time? And also I am starting in a new school in a new city next September – perfect chance for a new start, wigless. Or maybe I’m just setting myself up for a fall? The thoughts, anecdotes and opinions from fellow forum members would be hugely appreciated.

Thanks in advance!
Marie

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Hi Marie

I totally relate to your experience.

I don't have alopecia, my 22 year old daughter does, she was diagnosed when she was 12 years old. In the last 10 years she has regrown and had her hair fall out five times....it can be tiring.

My daughter will only stop wearing her wig if she has no patches of consequence and her hair has been back for six months. This has only happened once in the last 10 years - she was 16 and her hair stayed back for about 18 months...but then it fell out again.

She feels similar to you. Her alopecia is so uncontrollable that to focus on it would be quite harmful to her having the ability to get on and live life. Because she loves the hair she wears the choice for her when regrowth occurs is to shave what she has until such time as it is all back...like I said that has only happened once, even though she will often get to about 90% regrowth and then loose it again.

She is also a teacher like you. She works in a school with 2400 boys (all boys school), she wears different styled Freedom Wigs and changes them regularly...all the boys love her and her different hair. Her choice to change up her look regularly has given her an opportunity to educate her students about alopecia as well.

This condition is so challengeing - I don't think you are setting yourself up for a fall if you let your hair grow back. All you need to do is be prepared with a plan in mind if it should fall out again (you never know it may not).

The other thing that struck me in your post was the happy dance everyone is doing around you because your hair is back. I know that you know that you have no control over hair coming or going, so I really hope a sad dance doesn't ensue if you were to loose your hair again.

When Libby was first diagnosed a very wise woman talked to me about not making a big deal of hair coming or going (she had alopecia as a child and still does - she is now in her 40's). She said that when too much was made of either event the person/child felt unduly happy or unhappy and that often she use to feel like a failure when it fell out...be careful with yourself around this. Alopecia is not under your control...so do your best not to let it control to much of your life.

Good luck with working out what is best for you.

Rosy

Hi Wise1

I don't know if I agree fully with kids being more accepting. Kids do live in the moment and need adults helping to guide their choices, so they often don't get depressed or overly upset. Heck mum and dad love them so there is no problem. But kids grow up and alopecia can cause havoc. All the children I have helped are truly fabulous but the toll of alopecia in my experience has always had an effect that has had to be worked through. Many of the children I have helped over the years have turned into adults now, not a one would say that alopecia was easy for them, even though many now, my daughter included, would say 'it's all good now'. It's such a difficult condition to manage, with many having to cope with a lot of damage both physically and psychologically. I think it is hard for everyone no matter what sex or age.

I so hope that Marie keeps her hair, but if not I'm sure she will find her way.

Rosy

You know I certainly think I misunderstood. Sorry.

I love what you write and think you are wonderful with everyone here.

I appreciate your posts as they are caring, knowledgeable and supportive.

Rosy :)

Hi guys

Thank you for your comments. I really appreciate seeing things from other people's perspectives. Rosy it sounds like your daughter is very confident which is great to hear. I love the fact that some women can change up their wigs and not worry about what everyone thinks, especially being a teacher. It sends out such a strong and positive message. All the students she comes into contact with will hopefully now grow up understanding what alopecia is and why some people don't have hair - awareness can only be a good thing.

I don't choose to change my wig around and to be honest the less attention I get about it the happier I am - all the kids know, but school kids ALWAYS work it out. I mean, they do spend a lot of time looking at you when you're teaching so it's hardly surprising. I also wear a bandana (without my wig underneath)when I cycle to and from school and during girl's soccer which I coach so it doesn't take a rocket scientist! But in terms of big changes like a change of style, colour or going back to my own hair, I find it hugely daunting. I really hate the attention when I'm so used to not thinking about it anymore. The idea of not wearing my wig anymore makes me really nervous, and then the idea that it might all fall out again and I have to revert back to a wig gives me knots in my stomach.

I totally get what you're saying wisel about seizing the opportunity - why worry about what might or might not happen eh? But I'm just trying to avoid the situation where I have to watch my hair all fall out again and start panicking about what everybody at school will think when my job involves being in a very public position everyday. I know kids can be understanding, but there are a lot of them who equally cannot be, and it takes a lot of energy to deal with the whispers and comments when you walk into class looking slightly different.

The thing is Rosy you are right, alopecia is not in my control so I shouldn't let it control my life. But when I'm wearing a wig, I am in control and therefore I am not waiting for anything to happen. I'm just getting on with it. So to take it off feels like I am losing the control I have over my life, while I can enjoy all the benefits of someone who doesn't need to leave the house with a wig on every morning, I'll always be wondering how long it will last.

I hope I don't seem like I'm coming across as completely defeatist. I really appreciate your comments. It's just something that is really bugging me at the moment!

Thanks again :)

Marie

I so understand...it feels like when is the axe about to fall if you give up the control that your wig affords you.

My daughter is exactly the same ....she would never not wear her wig unless she felt like it was fully back and had been that way for ages. For exactly the same reasons as you have explained.

My heart goes out to you.

Keep working on it, you so aren't alone with your feelings.

Rosy

Thanks Rosy :)

Hey no worries, I totally get why you would delete your posts but thanks so much for the above. This site and others do give so many perspectives and it restores my energy to know it's not just me going through these tiring dilemmas! I wish I had access to forums like this when I was a kid but anyway, thanks again. Fingers crossed it'll work out either way and I won't be too disappointed if it all drops our again!
Marie
Hello!
I'm 19, i just got diagnosed with alopecia a few months ago so i'm probably no help to you. But it was helpful to hear your story. I'm currently in college and i'm studying to be a special education teacher at a high school. Since i got diagnosed with alopecia i became scared and have been even considering a career change because the thought of standing in front of a class full of people with no hair or random patches of hair is so scary to me. I haven't lost all my hair yet i still try to hide my spots but i've now lost about 50% of it so it's getting harder. I was using beanies, but it is now getting closer to summer (in California) so it's too hot for that. So i've just been trying to be creative with my hair but it's very noticeable and people have started asking questions, i just tell them the truth. I am a coach for a high school wrestling team so i can't really wear any hats there, it has been mostly the high school kids who have noticed. They haven't been cruel about it, they just ask questions and i answer them. I'm still a little bitter about my hair loss and have hopes that it will grow back but i have seen patches grow out and fall back out so i'm getting used to the idea that this will be my life and i need to stop hiding. I won't let it control my life.
So i say go for no wig, if your hair does fall out again the worst that can happen is that the kids will ask questions, that's uncomfortable at first but it's freeing being around people who know what's going on with you. Good luck :)

Hey Vane
I'm glad it was some help to hear my story, it always helps to hear everybody's stories so it doesn't matter if you're a newbie to this or not. If I were you I would seriously not consider a career change, I know it seems like a logical thing to do but there are so many things I missed out on when I was younger due to alopecia and I regret all of them. Like Rosy said above, you can't and shouldn't let it control your life. Just find ways around it.
I love water sports so spend a lot of time in a bandana. At first I hated the comments that I got for even choosing to wear that but eventually it's like water of a ducks back, and yep you're right, being honest with people really does give you so much freedom. I know what you mean with beanies - I used to wear one a lot but that was when I lived in the UK. I now live in Kenya and it's just not a viable option, but working in an international school I have to look smart so a wig is the only option. It does get pretty hot, especially during the summer months here! On the odd occasion I will come home hot and sweaty and generally quite fed up with wearing it (at which point it gets whipped off and popped back on it's plastic head - joy!) but then I think, where would I be without it? It's enabled me to do a job I personally wouldn't have the guts to do without it. I guess what I'm saying is, you should figure out what you're going to do in the long term, based on the worst case scenario - I know that when I did that (the 2nd time it fell out) I felt so much better that I had a plan.
Thank you for your advice and good luck for your teacher training, it's such a rewarding job. Don't let alopecia steer you off course!
Marie

Thanks for the advice :)
I don't think i would ever seriously consider a career change solely based on the fact that i have alopecia. It's just a thought that crosses my mind when i'm having my bad days and feeling sorry for myself. I like to remind myself that " i have alopecia, alopecia does not have me." Sometimes it's just hard because it's still so new and i'm still getting used to the idea that this is me now.
Hi Katadi

Sorry to hear about your alopecia, unfortunately there is nothing that I have been using that has helped. You're better off saving your money and focusing on how you can adapt to the hair you do or don't have, eg wigs, scarves etc. just found something called couvre that is good for patches - like a concealer. But in terms of cures, there are none.

Good luck,

Marie

You gotta do what you feel most comfortable doing and what will help you live without worrying about your hair 24/7. But just remember it's a huge blessing that you do have hair right now even if it may not last forever you are still sooooo lucky!

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