How do you socialize with alopecia?

Hi everyone, I would like to ask a few questions if I may?

How have you developed your own personal coping strategies for dealing with alopecia?

Did you develop the strategies alone or with your partner, friends, family or with professional help?

When you first went bald in public what was your personal feelings like and from the people who saw your?

Was the reaction positive? Was it negative?

Based on your personal experiences of having alopecia do you go bald all the time, only at home, only on vacation or a combination of wigs at work and bald at home?

Sorry for all the questions but I am very curious to see how other people deal with the social and psychological aspects of Alopecia and to compare my own experiences with them :)

Thank you for any reply,

Marina

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Permalink Reply by kastababy on January 7, 2014 at 2:20pm

Hi Marina,

I'd like to challenge you with a question of my own:

Is alopecia supposed to preclude me from socializing with other people and interacting with society at large, just because my hair falls out?

I've always maintained that the impact that alopecia has on someone's life is solely determined by how one *chooses* to allow alopecia to affect said life.  In other words, if you choose to allow your outward appearance to drive every choice you make and every action you take, then it will have a decidedly negative impact on how you deal with society and how society deals with you in return.  However, if you choose to move forward with your life and treat alopecia as something as ordinary as acne or stretch marks, then society will react accordingly.

Personally speaking, I've had alopecia since I was 4 years old.  I wore wigs in public until I got to college, and since then (outside of brief periods when all my hair grew back) I've gone just as I am.  Even in single digit temperatures like we've had in Nashville the past couple of days, I don't wear anything on my head - and society accepts me just as I am.  I personally believe life was much more difficult when I DID cover my head up, because I always felt like I was hiding something I should be ashamed of - and people around me responded in kind, as humans are wont to do.  I was teased, ridiculed, bullied, and ostracized, until I finally stood up and forced people to accept me as I was.  Those who don't I won't associate myself with.  You will hear countless people - on this site and everywhere else - say that my approach is a lot easier said than done, but I say that's just an excuse to NOT force others to regard you in the same esteem that you regard yourself.

My opinions, while certainly not popular, are given in the hope that they make you pause and consider how your view of yourself influences how you are viewed by others.  I hope it helps!

Happy New Year!

Permalink Reply by Paulina on January 7, 2014 at 2:23pm

kastababy, that is amazing. thank you for sharing.

Permalink Reply by Jane on January 10, 2014 at 3:10pm
Very moving to read all you write - it is so true and you are so brave - all the best to you this year xxx
Permalink Reply by Rose on January 16, 2014 at 12:02pm

This hits home for me.  Thanks for your post.

Permalink Reply by Yvonne on January 7, 2014 at 3:15pm

I have had total hair loss for over a year now.  It has been a very hard journey.  For me, I always wear a wig in public.  The minute I get home, off it goes!  I am really not comfortable without my wig for people to look at me, but I do take it off in front of my family.  I hate to be lying on the couch and worry that someone will come in and see me without my wig on.  It is still a secret to most people, which is sort of bothering me now.  I feel like I have a big secret...but I haven't done anything wrong...it is hard.  There are no right or wrongs with this disease.  Do what is right for you.  And, from what I have read, it changes often.  I am counting on that.  Its okay to mourn the loss of your hair and your life with it.  But don't get stuck there.  There is a lot of joy you will miss.  Bless you.

Permalink Reply by Hannah on January 8, 2014 at 1:58am

Hi Marina!

For me personally, I wear hats to school. When I started my freshman year of high school I had large bald spots and was still losing my hair. I didn't wear a wig because a) I don't like waking up earlier than I have to (hahaha) and b) I played volleyball and thought it would be weird to go to school with hair and have no hair after school when I play. 

I am a senior now and I still wear a hat (it's habit), but I am comfortable being bald around my family (as I always have been) but have yet to go out in public without either a hat or a wig. I know I will one day, but I'm just not ready for that giant leap. I feel like I would be more comfortable being bald if I go to vacation on the beach or something; who knows.

I wear a wig occasionally; usually if I go out with friends or it's a special occasion. But most people know about my condition even if I'm wearing it. 

Honestly, volleyball has kept me pretty grounded; besides the occasional "chemo" remarks during some out-of-town tournaments, everyone on my teams and all the coaches are extremely accepting and don't seem to care. If It didn't have volleyball, I think the transition from having a full head of hair to no hair in a matter of months would have been extremely difficult for me.

I think that this condition affects people in different ways, and it's a choice whether to think of the glass as half full or half empty. I have chosen (most of the time) to think of the glass as half full which makes dealing with having alopecia universalis a little bit easier.

Hannah :)

Permalink Reply by lisa on January 8, 2014 at 8:41am

Interesting question. I  don't go out in public without my head covered, or without wearing a wig or weave. I am tired of partners not wanting me because of my lack of hair. I guess this is an excuse? I was told why would they be with someone with no hair, when they can have someone with hair. I have androgenic alopecia. I tried using nettle tea, because this blocks the testosterone from becoming DHT. Well my hair grew about 3 inches in 2 months. Then I started to get headaches from the nettle tea , and slowing my hair broke off.  If I am at home alone, I go without my head covered. If I'm having company or going to the store, I cover my head. On one occasion I did go to work with nothing on my head. So everyone saw that I suffer from male/female pattern baldness. It was very difficult dealing with the questions. People thought I was sick or dying. When I told them it was alopecia, they just gave me a strange look. I really wasn't looking for pity. But I guess that's what you get. So, I never went out in public like that again.   

Permalink Reply by Ericka on January 8, 2014 at 8:03pm

Hi Marina,

 

I have had AA for 20 plus years but decided about 2 years ago to go bald, and I haven't gone back on my decision.   It has been liberating for me, because I always felt like I was hiding behind the wigs.  Although it is more socally acceptable to wear a wig, it made me feel very self conscious as if people were wondering why I was wearing a wig.  Now they don't have to wonder.  

I work in healthcare and pretty much meet new people daily.   I get a gamut of responses, some negative, some outright stupid, but amazingly enough I get a lot of positive responses from both men and women.     Being bald is who I am now.  Ive learned to accept that part of who i am, but it is a daily journaland battle  like every other aspect of our lives.  

 

Thanks

 

Ericka  

 

Permalink Reply by Jessica Hoschouer on January 9, 2014 at 7:40pm
Well honestly, I was diagnosed with my alopecia at the age of Five, I am now Thirteen. I have pretty much grown up with Alopecia in my life, I started Jr. High back in August and I am loving it. I actually never wear wigs, yeah I do have some but I have become used to people staring at me and giving me weird looks, I just always try to remember that it is not your hair that matters it is who you are on the inside that truly matters.
I hope this helps,
Jessica Hoschouer
Permalink Reply by Jessica Hoschouer on January 9, 2014 at 7:40pm
Well honestly, I was diagnosed with my alopecia at the age of Five, I am now Thirteen. I have pretty much grown up with Alopecia in my life, I started Jr. High back in August and I am loving it. I actually never wear wigs, yeah I do have some but I have become used to people staring at me and giving me weird looks, I just always try to remember that it is not your hair that matters it is who you are on the inside that truly matters.
I hope this helps,
Jessica Hoschouer
Permalink Reply by Jessica Hoschouer on January 9, 2014 at 7:40pm
Well honestly, I was diagnosed with my alopecia at the age of Five, I am now Thirteen. I have pretty much grown up with Alopecia in my life, I started Jr. High back in August and I am loving it. I actually never wear wigs, yeah I do have some but I have become used to people staring at me and giving me weird looks, I just always try to remember that it is not your hair that matters it is who you are on the inside that truly matters.
I hope this helps,
Jessica Hoschouer
Permalink Reply by Johanna on January 10, 2014 at 6:01am

Hi everyone

This has been one of the most helpful discussions I have read in a long time. I'm glad you decided to ask those questions, Marina. Thank you!

I started wearing a wig a couple of months ago. I have alopecia ophiasis and have very little hair left.  I don't wear a wig at home because as long as I even have some of it, I won't have to explain my two little boys why mommy has no hair. I really don't want them going around telling people about it. I've told my older son that mommy has lost a lot of hair and wears this "additional/extra" hair. It's kind of similar to wearing make up. You want to look prettier. This way, if he tells people I have this extra hair (I have avoided the word "wig"), people can assume it's only hair extensions or something. As you can see, I'm far from being OK with all of this.  

I have a good human hair wig that looks almost exactly like my old hair. It doesn't attract any extra attention. My friends, those who don't know about my alopecia (and there aren't many that do), think it's my own hair and don't give me any second glances. This has made a HUGE difference in my life!!! I'm NOT ready to be open about this. I don't want people to know. There are times I still can't believe this has happened to me. However, I can almost forget about it when wearing the wig. I know there are many people here who say they never got used to wearing one but I must say that I absolutely LOVE mine . It has given me the kind of freedom I thought I'd lost for good.  I don't think I will EVER go bald in public (maybe ask me again in 20 years :) and I feel confident when I'm wearing it. I used to wear head bands to cover my bald areas but it became impossible with so little hair.  I also have another, cheap, synthetic wig I wear for gym classes. I enjoy exercising more now that I don't have to worry whether my baldness is showing. I wear a head band over the wig to keep it still (it would keep still without it, I'm sure, but I don't want to take any chances). I don't find that I sweat considerably more with the wig on. I guess I could say the wigs ARE my coping strategy.

It as been and continues to be a very hard journey but I guess I have learned a lot, too. I pay more attention to taking good care of myself and having fun regularly! I make sure I don't let alopecia restrict me from doing the things I want to do and being the person I want to be. (There are a couple of things I have not resolved yet such as swimming), I remind myself it's just hair, it's not cancer etc. But yeah, it's hard. It's like Yvonne said, it feels like you have a secret but you have done nothing wrong. When people complement your hair (your wig) you say thank you and feel guilty and ashamed. 

My husband has been extremely supportive. I have seen a therapist once and will continue to see her. As said, I haven't told many friends but those who know have been nothing but supportive (but I've also been very selective about who I've told). So I guess I am lucky in that sense.

It has been a relief to read that there are many other people out there who say they would never go anywhere without a wig. I have always wondered whether being able to face other people au nautrel means that you have accepted this condition. Or can you accept it and still wear a wig everywhere?

-Johanna

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