Alopecia World
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So today my dermatologist told me my hair is coming back...doubtful
Im over it all...the wigs are not comfortable. The drithoscalp is horrible on my head....the shots are worse. I've become a shadow of my former self. Today I just realized I love the beach but I will never dive into a wave or enjoy the ocean again. Wigs just don't go well there & I'm not ready to go out in public and look like I have some horrid illness. Married for 1 year in Dec. this has happened SINCE we got married. How can he ever see me as the same attractive blonde I once was. My husband views football uniforms as the making or breaking of a team and I'm almost bald at times. Insecurity has taken over, I've lost my faith, God has betrayed me, I'm bitter & hateful, a shell depressed and unhappy. I don't understand how to handle this, I just want to sit and cry. I tried handing it over to God, nothing. This cant be Gods plan for me. What I have failed to tell you is that at the same time all of this goes along with a Ossipital nerve problem so 3 nerve blocks later it has not helped and the pain in my head from this is unbearable about once every two weeks (going on about 6 months now).
My mother-in-law (who wears a wig also due to a highschool accident) told a member of their family (whom I barely know & saw in the store a few days ago) that I was wearing a wig. I haven't even told any members of my family except immediate (mom, dad, brother) I'm so angry with her, she had no right to do that. My mother and father only know because my mother has helped me purchase 2 of my 3 wigs but she still really doesn't understand, she tries.
Everyone says "buy a fabulous wig" what they don't understand is some people can't afford that. I've researched wig places some are so high others reasonable(the reasonable ones look bad most of the time). But I'm unemployed due to I think the Alopecia. Layed-off for no reason after being told for months I was doing a wonderful job and loved by all, my hair started falling out and I lost my job. Now I clean homes for a living (as many as I can get in this economy) because there I can wear a hat and no one is the wiser.
What do you do??? People are so judgmental and mean. I love hats but you can't wear them all the time and it seems every one I get my husband looks at like 'youre really going to wear that'.
Replies to This Discussion
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Permalink Reply by Tallgirl on
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Some ideas that MIGHT help: Get unemployment. Have hubby shop for a cool wig with you: tri-colors with bangs look fairly natural ($150 or less. Ask for an alopecia discount.) Suggest church or relatives help you pay for a nice wig, or appeal to a Soroptomist group. Open up to telling a few trusted people. Make sure bitterness isn't what loses you work. Get counseling...maybe WITH hubby. Good luck!
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Permalink Reply by Dana on
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What is a soroptomist group? I am so new to this I don't even know where to start and my community is very small. I doubt they have any type of counseling group here for alopecia but I would be interested to find out....any ideas.
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Permalink Reply by Rose Marie' on
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Hi
What you are feeling is very normal. It takes time to find your way through the shock and misery of this condition/disease. Don't be too hard on yourself. YOU will find your way through this. It will become something that you can work within.
I remember the shock and horror I felt when my daughter first began to loose her hair (she was 12 years old) she is now coming up 21 and still dealing with her hairloss.
I can only pass on the things that helped me. The first thing I did was to educate myself fully about alopecia areata and what it was for people dealing with it, how the medical field dealt with it and how I felt it would be best to help my daughter deal with it. Education around this condition is very important as once this is done you can make informed, empowered choices. For me and my daughter this has really helped.
Like you have done I became involved with sites like this one and in my community searched out and met those dealing with alopecia. This again made an enormous difference to my attitude and my daughters. Meeting people that had been dealing with this condition was a relieve and gave me a general knowledge of what seemed to help many people. I was fortunate to be nurtured and cared for by the alopecia community in my country (especially one lovely lady), her attitude and support changed mine and my daughter's life.
I began researching what things would help my daughter and empower her to make her alopecia areata a small part of who she was (never to be denied but never to overshadow all she did either). Cosmetically, I began researching options for her with wigs. I found an exceptional piece of equipment (her wig) that became instrumental in empowering her. I was encouraged and then encouraged my daughter to make informed educated decisions around all her choices and for us she really has never looked back to the darker days at the beginning of this journey.
I understand how lost, frustrated and fearful you are feeling, do your best not to get stuck. Find options that work for you, no matter what they are. Do your best to move past the victim to be empowered in the changes that have happened. Also give yourself time - as you do have to grief as well along the way. This isn't easy but is very doable.
Hang in there this will get better.
Hugs
Rosy
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Thank you so much for the kind words, you will never know how much it means. It is so hard to accept what is happening. I don't live in a large community at all so finding an alopecia support group is almost impossible. I've always been so outgoing and a huge people person and this is just so difficult. It's been 4-5 months now since my hair really got bad. However through all of this I cannot possibly imagine what it would be like for a child, children can be so mean as can adults. Did you ever get really tired of everyone being in denial???? My mother keeps telling me it's going to come back and it may be something else. She is supportive but just does not understand (or can't grasp what has happened.
I guess I don't even know how to not get stuck...lol...how long does the process of grieving take. Right now I just can't even imagine not ever having my hair again. I've just begun to even feel comfortable around my husband and feel like I could even let him know what is going on. He's never been a big talker so that makes it even more difficult. I still need so much support it seems and it never seems to be there. I would be the type normally who would start my own support group here but how do you even go about something like that???Thanks So much again ROSY,
D
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Permalink Reply by Carol on
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It does get better. trust me. whether u end up wearing a wig, hat or scarf (or nada) it does get better. u will eventually make choices that allow u to live your life like u did before. but i always felt the very most important exercise to do starts in the morning. when u look in the bathroom mirror smile. even if u are crying. even if u dont believe the smile at first. look into your eyes and and smile. it does have an effect. love yourself, the way u r first. the rest will follow. people will always say things. i believe, not because they are mean, but because they are insecure. don't feed off of their insecurities. and give yourself time. it is very hard to believe ( i am au for 27 yrs.) that one day it will not be the first thing on your mind. one day it will not be the 3rd for 5th on your mind. and i love the advice i read here. take your hubby with you. see what he thinks is cool. but remember....it does get better...if you allow it.
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It does get easier. I know that a big life change for me was when I met other women through Bald Girls Do Lunch organization when they met near me in California. The director, Thea, knows psychology and relationship issues and practical beauty stuff. I was looking at their schedule today for the next California event in San Francisco( yippee! coming Dec 8-13!) and I saw that they are going to be in your state very soon.
Try to meet them.
Spenser
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