Alopecia World
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A question of transparency - and summer wig suggestions?
Hello AW, I would love to know how wig-wearers "come out" to the outside world. All my hair fell out in about 3 weeks back in Aug/Sept, so I'm still new at navigating how to explain this to people. I have two jobs. One "professional" job in an office, where I have only told 2 people (not my boss) and I only told one of those people because she kept commenting on my hair and how good it looked all the time. (thanks, Jon Renau!) My other job is as a yoga teacher, and I am *very* open in that community - I teach in a shorter wig, and practice bald. Then, there is my personal life.
Questions - three sides - same coin:
1. Should I tell my boss and co-workers about my alopecia? I'd love the option to mix it up and wear all these great wigs I've been collecting. However, it would also mean having to tell people in my building, etc. etc. It's a lot of openness for a person who is constantly trying to hide.
2. In my yoga job, I work with one person who, whenever I see her, makes comments about my appearance. She told me I looked like Barbie in my new blonde wig, keeps asking me if my eyebrows are really that color, and what my real hair color is, etc. etc. It isn't intentional, she is very sweet, just immature. I took a leap, and made a choice to be very open in this community, but the result is definitely being tarnished by this weekly encounter. Is there a kind way to tell her that I'm not comfortable having my appearance be the topic of every conversation? Or, should I tell her nicely, just that?
3. My personal life. I've been in a relationship with the most wonderful man for almost a year. He has told some of his good friends and family members (who I have met) about my alopecia, which I was surprised to hear, but now I feel weird about them knowing about it and not having the discussion with them myself. For some reason, not having control of the situation makes me feel, well, out of control.
Is there a "right" way to be open about it? What's ironic, is that I know, with absolute certainty, not a single person thinks or cares about my hair. At all. It's all just my perception because all I can see is WIG WIG WIG whenever I look at myself.
While I'm up here, I'd love to know what to do about how to manage wig wearing in the summer. My wigs aren't nice enough to put up in a ponytail, and it gets CRAZY hot and humid here.
Insight and advice welcome and appreciated!
Replies to This Discussion
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Permalink Reply by Joanne S on
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Good morning,
1. All of my coworkers know about my AU and wig wearing. I work in a doctors office so some of my patients know also. I try to be open when people comment about my "hair", I tend to tell other women but if men comment it is usually a compliment and I just say thank you.
2. I go to the gym 4-5 times per week and do wear a buff, some people know why and some don't, if someone asks I will tell them and I try to get out the AU part quickly because everyone assumes a bald women has cancer. I was wearing FLW for a couple of years and applied them for a week at a time so I had hair all the time when I switched back to synthetics that is when I stopped wearing hair to the gym. As far as the young girl in your class if you bothered by her comments I would nicely tell her so she may be unaware or curious.
3. My situation is a bit different I am married and have two sons 20 and 23, I lost all of my hair 4 years ago over a 5 week span. My sons have been very open with there friends since it happened and none of them seem to care, I think the younger generations are more live and let live as far as people being different. We were attending parents weekend and I made a comment to my youngest that his friends must think it odd my hair changes and he told me that they all knew about my hair so it was no big deal.
I do not think there is any right or wrong way of dealing with our alopecia. One day at a time. I have set a goal for myself this summer, I also live in a hot and humid summer climate, I am going to be comfortable when swimming and hanging around my yard and try just a buff. I still have a hard time being bald in front of anyone but immediate family hopefully that will get better but after four years I am not sure it will.
Good luck, thanks for sharing.
Joanne
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Jon Renau O So Light are good wigs for summer, especially if you stay the shorter styles. His wig caps are not itchy and very comfortable. Some of the worst wigs I've found for holding in the heat and being itchy are Raquel Welch. She has some beaufiful styles and the wigs last a long time but that memory cap is hot and itchy. It's very light weight, amazingly so, buts it's still one on the most hot, itchy wigs that I've ever worn and I have tried many brands. Rene of Paris and Noriko make the most natural looking, beautiful hair their wig caps are very hot also. Not as itchy as memory caps which conform to your head but they aren't open wefted thruout the top so they are Hot! Paula Young actually sales some nice wigs which aren't hot and itchy. She has good wig caps that are very comfortable but sometimes it's hard to find a style that you like. I've returned several and never had a problem with returns however there is a restocking fee I believe. Her wigs don't last for a year like a Jon Renau but they are much less expensive so if you find a style you like you can afford to replace it sooner. I still have some baby fine, thin hair so encounter the uncomfortableness maybe more than people who have no hair. I also wear a wig 8 plus hrs. every day to work, all year round. When people know you wear wigs they eventually get past the new styles and colors and stop asking. It gets old like everything else. Stay light about it and as long as you take it stride it will fade away to more interesting topics. It's my problem. I deal with it. If I'm happy that's all that matters to me. Hope this helps.
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Permalink Reply by paula on
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i understand your concerns and worries, and even though i have had AU for 29 years, i still worry about what i should tell people. i always get compliments on my "hair".....and if i have known the person for a long time i tell them it's a wig. but meeting new people is harder for me. i usually just say thank you. many ask me where i get my hair done...i just say....a friend cuts hair. i wish i were like some people i know who just tell people flat out that they have alopecia and they wear a wig. but i guess it's just not me. do what you are comfortable doing. if you tell everyone....just do it with confidence and don't worry what they think. if they are awkward about it, it is THEIR issue, not yours. good luck, stay strong, and know that if you do choose to tell everyone, that perhaps we in doing so, will raise more awareness about alopecia!
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Permalink Reply by Hilary on
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My hair fell out at 43 (four years ago), gradually over 3 mos then rapidly for a week. I was able to hide it till that last week, then got a wig. I was surprised at how many people didn't really notice. Most people are too busy to be observant. I worked in a busy financial firm and was very visible. I only told my closest friends at work. My family, best friends and all knew...but I figured if people didn't ask, I didn't have to tell. Especially with the wig I have now, which is a Follea. It was $$$, but has lasted for over a year and fits my shaved head like a glove. Worth the money. The other ones barely lasted 3 months. The cap is rubbery and I can't feel it at all.
Good luck to you! :)
Hilary
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Permalink Reply by Dorothy on
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I have had AU 41 year this May. So much of your situation sounds like my situation. In the first year I had a situation where one of my sister in laws had obviously been talking about me, I walked into her home for a mother's day event she had invited us to, and as soon as I walked in the room the chatting stopped and everyone there was staring at me, her very old grandmother very loudly asked "is that the girl with no hair?" I was horrified, so I immediately did an about face and told my husband we were leaving, NOW. I was in tears and felt the very core of my private life had been violated. I would tell your friend that you would like to decide who knows or not about your condition.
About the co-workers, you decide there as well, some times when I decide to tell someone, they immediately go to the line"Oh then you can wear whatever style you want, a blonde one day, a red head the next." I have to tell them while they might like the change up, as for me I stick with one style until I become bored and then I think very carefully about a change because I DO NOT wish for everyone to know.
As far as the curious person, I would simply let them know that I prefer not to talk about it, as I am still adjusting to my situation.
In my past if I have anyone compliment on my hair, at first I was horrified that they were paying attention to me at all, so wanted to be invisable. I finally was told by a very close friend, just take the compliment, say thanks and go on about the day. It took me awhile and even some times now someone catches me off guard and I stammer at bit, but collect myself and just say thanks, try to compliment them on something to take the attention off me and I move on.
The biggest thing for me is, I DECIDE who knows or not, when and IF I tell them and how much. This is my life and I am not going to be bullied into going into an area of my life that I am uncomfortable. I personally am a very private person, in my job I certainly do NOT want people who work at the same place coming to our office and say something like "Oh your the one who HAS to wear wigs." I do not want to give them a reason to talk about me, let them gossip about other things, not me.
I have been wearing Paula Young wigs for well over 20 yrs now, maybe even over 25 years, they usually are very comfortable, have good sales that help me afford my wig replacements. I think I have been wearing this same style and color for close to 15 years now and as long as they keep making it, I will keep wearing it. Living in Ohio we have all sorts of weather, horrible hot to freezing cold and my PY wigs do fine, in the beginning I almost had other brand wigs blown off my head, but these seem to do better, while I am still afraid of those windy days, the reality is none of them have ever, to my recollection, tried to fly off my head.
Hope I said something that helps, I am not sure if I ever do as I am such a negative person when it comes to my AU.
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Like you said nobody really thinks about your hair, we just think about it all day because it's something we battle with. When I look in the mirror the first thing I look at is my wig because that's the thing I'm most self conscious about. You sound like you're coping really well I'm so happy for you!
As for the summer - I'm totally in it with you it gets really hard to wear a wig. I either wear a wide head wrap on it to keep all the hair out of my face or if it's still really hot I wear a cap or some sort of head cover I purchased online at myheadcoverings.com they are really great with guiding those with hair loss to find the perfect head covers.
Hope this information will help you out! Good Luck!
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Permalink Reply by MagPie on
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See? This is why I am so grateful to have found AW. Your advice, insights, information, and shared experiences are exactly the kind of support I need. Thanks, everybody.
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Permalink Reply by Janet on
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I, too, was encouraged by everyone's reply to you so thought I would add my own. I had recurring bouts of AA for over 20 years but the bald spots were easily concealed by my hair until the regrowth from treatments came in. Then last year the treatments could not keep up with the encroaching bald spots and my doctor stopped to "let it run its course" which was AU! Yes, I had some very difficult moments at first, but about 6 months later as summer approached I knew wigs would not work for me. My head and scalp sweat profusely, so I switched to hats and now often just go out bald. I was a bit self-conscience at first and even now sometimes, but believe God put a shield around me so I haven't heard any negative comments. He has given me great courage, strength and peace; and surrounded me with great friends/family and a wonderful husband. My main defense is an offense...I hold my head up, look people in the eye, smile and speak first (about the weather, groceries, whatever). I think it disarms them. My difficulty comes when people suppose I have cancer. I don't want to disrespect those courageously fighting that, but don't know what to say. Anyone out there have suggestions?
One last thing...I think you look great bald. Janet
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I am single and have felt from ridiculous to don't mind as far as my AU is concerned! I also tried to hide but lately, I've found it freeing to get over it and not be so stringent upon trying to hide it. I have found when I want to talk the truth that when anyone compliments me on my hair (PU), I just say "Thanks, I buy it"!! I used to pay a lot for wigs but for the past couple years, I've used Paula Young and my current one was a BOGO and I love it. I am now going to be more experimental with colors, styles, etc. My own hair is so much worse than the fact I wear wigs. I used to sit at the back of the church so no one could see the back of my head with the wisps of hair. I no longer have to do that. I also joined a dating site and, thanks to someone on this site, I put a blurb in my Profile that I have AU and they can look it up or ask me about it! Again, this is so much easier than trying to hide from it. My AU has also been amusing at times as I lost all my pubic hair very early (don't need to go to the expense of getting that result), ended with five or six hairs on one leg which pulled out very easily and never came back, and, for a while, I only had to shave under one arm -- but now, not at all! I always wear wigs in public but, when I get home, I change my shoes as soon as I can for slippers, and take off my wig. I do, however, understand how you feel and it took me a long time to get to where I am now. In my case, it would have been so much better to have unloaded all the hang ups a long time ago. As you know, we tend to have 20/20 hind sight and very poor foresight! Good luck to you and I pray that you find a more peaceful solution for all three of your situations!
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I also am so happy to have found this site! I have had AU since 1991 and it was within the past two months that I finally searched online and found this site!! I'll be eternally thankful!!
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