Comment by jasmine on May 17, 2013 at 5:47pm

Iam sorry that you don't have the support you are seeking from your family. This site is great for support and I hope you will be able to talk to everyone here. Just curious-Why do you believe your family is not being supportive?

You're not alone...I can't wear my hair down either. It was a tough transition for me since I always used to wear my hair down (So i know how you feel)

Comment by Pat on May 18, 2013 at 1:56am

So sorry you're going through this Madeline and that you feel unsupported by your family. I think family can go into a kind of shock and denial at what's happening and tend to minimise or ignore it. The best support is from others who have experienced the same situation. Even people whose hair falls our with cancer treatment can feel no one understands. Someone I knew lost her hair with treatment and said it was worse to cope with than having cancer! So you're not alone. Keep posting and you'll find a lot of support here.

Comment by Madeline on May 20, 2013 at 4:54am

Thank you both so much for your kind words. I am so overwhelmed by the kindness and generosity demonstrated on this website. I think I misread my parents' alarm as well as ambivalence towards accepting my condition as a lack of support. They have been making a lot of "well at least you don't have cancer" type comments which are really not helpful, while true and aimed at broadening my perspective. I tried to talk to my parents about more treatment options, but they want to wait and see and I can tell that they are under the impression that this is just some anomaly that will correct itself in no time. I mentioned the possibility of a wig, and my mom thought I was joking. I think they're just experiencing shock as well, and they probably also think that if they remain calm, I won't freak out as much. I've experienced quite a number of health issues, so this really was just another blow to my self-confidence and esteem. I've always had to be tough in these situations, and I think my parents were expecting me to handle this in a similar way. These past few weeks I have been trying to ignore the alopecia by styling my hair differently and just going on with life, but it's hard. I never appreciated my hair, and I never imagined being jealous of people just because they have a full head of hair. Boy, the things we take for granted! I realize that so many people have this worse than I do, and I am humbled by all of the amazing stories that have been shared on this website.

Comment by Pat on May 20, 2013 at 6:01am

Out of all the problems I've had in life I never thought losing my hair would be one of them! Most people don't know about alopecia and I'd never heard of it before I got it. As you're getting steroid injections they do work for some people so don't give up on them yet. It's disheartening to see more of your hair fall out though, so it's a very emotional roller-coaster right now for you. If you are thinking of getting a wig, now is the time to source one you can live with - even going into wig stores to try them on will give you some idea of styles etc. Always good to have a back up plan I say. If you have a really good friend I suggest you talk to them about what's going on and ask them to come with you when you try on wigs so they will give you their opinion - but only do this if its someone you trust and are completely comfortable with. I took a friend with me when I got my first wig as I didn't want any of my family with me - they were too traumatised by seeing me bald to help me at that time and I felt uncomfortable enough without having to deal with their emotions as well. A friend can be more detached. Good luck with whatever you decide to do.

Comment by Bety on May 20, 2013 at 2:53pm

Really sorry you are going through that. I was 16 when I found the first patch, 17 when I was diagnosed and it took my mom like 10 month to finally come to terms with my condition. She used to tell me the very same thing "be thankful is not cancer, or at least you are not missing one of your legs, is only hair", it was hurtful at the moment, but later I understood that she was saying those things to herself, she thought that it would be better for me to put it from that perspective and it was her way of showing her support. I'm sure your family wants to support you, but they just don't know how (at least that is what happened with my family) Hang in there, we are here for you :)

Comment by Anth on May 20, 2013 at 4:25pm

it can be soooooo tough when you don't feel acceptance and support from family members. i know this first hand. but here's what i've learned. people are scared of the unknown. it threatens them and takes them out of their comfort zone. alot of the time they really can't help it because it activates within them their own insecurities and superficial hangups, and they have a hard time separating this unknown thing from you. it gets all twisted around. there is hope.
their hangups have nothing to do with you. you may be the target of their insecurities, but in reality its something unresolved in them thats causing them to do it.
it took my family awhile, but they've learned (alot from me teaching them) that different is beautiful. and that i am the same person.
i know it must be scary, and isolating, but take strength, and know that you can be a pioneer for diversity in your own right.
absolutely here for you.

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