Thought I was coping but now I am not

Hey there, I started with alopecia areata nearly two years ago and this summer in July all my hair and body hair fell out and I have alopecia totalis,  I was wearing wigs going out but now I hate them especially when I am eating a nice meal, I spent €350 on a wig and it feels like a swimming cap on my head and I am so conscious when people hug me or I am dancing and it just didn't feel right so I decided to go out bald.  I live in Clonmel a very small town and I tried going out in Cork bald first which was very successful but in Clonmel it is awful EVERYBODY stares, some are more mannerly than others and look away but others (mostly people I would not associate with anyway - very ignorant) keep starring and making me feel uncomfortable. I try now not to give anyone eye contact and it helps.  I seem to be taking it out on my husband the most because I feel so ugly and unfeminine and want to test him to see if he sill is attracted to me, he always trys to reassure me but I know it is how I feel so insecure and nobody can help me.  I would love to meet just one other person going through the same feelings as me to talk.  I tried to set up a group in Clonmel but nobody was interested.  I have to go out to dinner tonight and am already dreading it, I just want to sit in home and not leave.  I am thinking of getting a t shirt made to say "I just have alopecia please do not stare" and wear it out and about.  Some days I walk up town bald and just say flip everyone but it is never an easy task.  I go bald in work and the people are great but in another building I have to visit for work they are not so great.  I feel like I am in a hole, I just wonder is there anywhere I can turn for help or advice please?  My name is Caroline

Views: 215

Comment by GardenJess on December 7, 2014 at 3:00pm

I don't have advice, but I can't have read your post and not comment. As you know, even if there is no one right around you going through this, you are not alone. I've also been dealing with alopecia for about 2 years, and, while there are times when I don't think about my hair at all, and times when I feel confident, there are also times when I am just down about it all. I have some hair, but it is white and not really presentable. Over the summer I shaved my head and went bald among family and strangers, but not really around acquaintances. I got used to the bald look and thought I looked OK. I find it hard for others to understand that not wearing a wig can make sense. For me, I really don't like wearing wigs, but these days I do put one on for certain situations. I also tend to have my head covered one way or another, either because I am hiding from the sun or keeping warm. If you are feeling self conscious bald, maybe wearing a scarf could be a positive thing. I have also wondered about making a T-shirt to explain my lack of hair. As is, I tend to be very open about my condition, telling people whenever an opening presents itself so that I don't have to worry about what people are thinking. In my confused existence, I wear a wig to work in my child's classroom, but then almost never wear a wig when I am at the school for other reasons, such as getting the kids from school every day. So I felt better after I told the teacher what was up. Even with a cap on it is pretty obvious that I don't have hair. Especially with all the chaos that having kids adds, I made a conscious decision at the outset that I wouldn't stress about being exposed when I did wear a wig, so that helps.

I struggle with my feelings about my hair and my husband too. He would prefer to see me in a wig all the time and has never said that I am beautiful with or without hair. Perhaps I would wear wigs more if I felt like it was about pleasing me and not other people. Perhaps I would take more care about my appearance in general if I had someone telling me I was beautiful as I am. Just to be accepted as we are. That's what it is all about. Hang in there. You are strong enough to go out into the world as a bald woman, and I admire you for that.

Comment by Caroline on December 8, 2014 at 2:02pm

Thank you so much for your lovely reply.  I, like you, have good days and bad days.  My husband says he sees past the bald head but he hasn't said that I am still beautiful either.  I sometimes feel it would be easier if I was single because if I met someone while being bald and they fancied me I would be ok but sometimes I feel sorry for my husband and wonder does he genuinely still fancy me.  I guess being single would have it's own problems too.  I guess in every situation we have to take the good with the bad.  Thank you and hope you are having a good day today.

Comment by newlydiagnosed on December 9, 2014 at 3:16am
I feel u, I am so angry with my husband I yell at him get mad cause I am bitter and angry deep down, I fuckin hate this disease...Some days are worse then others today is bad and I hope he drops dead cause I am so fuckin miserable and bitter and anfry..
Comment by kymkym on December 9, 2014 at 4:10pm

What you are going through is not only stressful but quite traumatic. If you are in position, seek counseling to help you cope and help you to avoid lashing out at your loved ones.  Your feelings are valid and this journey really does take you on a whirlwind of emotions. 

When you made your vows your husband and you said for better for worse, and so and so on.  Why do you need to test him?  Sit down with him and express to him your raw feelings and then listen to his feelings and be understanding just as you want understanding. 

 

There are many people here who can identify with your feelings.  My teenage daughters gave me the final push I needed for me to go out in public bald over 2 years ago and I have never looked back.  When you walk out in public, hold your head up high and walk proudly.  

 

It took courage to come here and express your feelings.  I hope you really get the support you need so you can live your life as best you can.

Comment by Caroline on December 10, 2014 at 4:02pm

We all have to understand and don't judge anyone, everyone possesses different ways of dealing with all issues in life. Some people may get the proper support needed and others may not.  I am lucky that I have great family and friends support but if I wasn't getting support from them I would be angry and upset and I can relate to these feelings.  Hopefully in the end we will all have more good days than bad and learn to cope with this cruel disease.

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