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Comment by TurboK on June 4, 2023 at 9:21pm

@Larry
I am still in this Group. It hasn't been active on this subject since 2019, but there are a lot of posts under other discussion topics.

Comment by Larry Barbee on June 3, 2023 at 2:01am

Is this group still active?

Comment by TurboK on December 25, 2019 at 12:21am

Well, it is another Christmas home alone. I delivered a gift to my adopted great-niece, who iust turned 2 in October, and that was the extent of my holiday. I was invited to a Christmas Eve Service, but I didn't go because of the bad experiences I have had in the past at other churches.
How do others deal with this? I never had anxiety before, but after the AU hit, I have suffered from a crippling social anxiety problem. Sure, I am in therapy, but it doesn't help. No, I will not take any kind of mind altering narcotics, because they don't fix the issue, but rather make you numb to it.

Comment by TurboK on December 15, 2019 at 6:16am

Hi Larry
I am originally from IL, but I was living in Burlington, NC when it all started. I was also a software engineer for the lab testing company that is headquartered there. I was so happy to get out of there, because living with Alopecia there was pure hell. My niece, by marriage, lives in Wilmington, and is the only reason I would ever consider visiting that pit again (no offense).

I never go anywhere without something on my head. I just recently found a wig that is very close to my natural hair color and the length it was when God decided it needed to be ripped out.

Shortly after moving here, North of Green Bay, I was at a pet expo and someone thought I had been separated from a group of special needs folks at the show, and offered to help me rejoin "my group." It wasn't until I met a guy that had AU that I started feeling a bit better. He managed to get his Rottweiler certified as a therapy animal, and he took her everywhere, so people would leave him alone. I thought about trying to get my pet set up like that, but a Caiman (mini croc) doesn't lend itself to that. I settled for a Flemish Giant Rabbit named Xena, and she took all the attention off me, because she was 20 lbs, and walked on a leash.

My photo was taken a couple years ago by my BFF. Some people think we are siblings, because her family has adopted me. It was taken at DeYoung Family Zoo in Wallace, MI, where we both volunteer. I don't get judged there like other places, but I think, like the rabbit, Crackers takes all the attention off me. Oh yeah, he's a 5 foot American Alligator that I have helped raise. He is clicker trained and like a big scaly dog that you don't turn your back on.

This morning, I am going to try to attend a UCC Church in Green Bay. The Associate Pastor has been after me to visit. He said that since God gave me AU, he figured he could deal with me wearing a cap or wig in church.The only other church that will allow me in here is the MCC Church (a.k.a. Gay Church) where a friend is a member.

Comment by Larry Barbee on December 14, 2019 at 12:16am

Hi TurboK.

I was mortified by how you've been treated. Especially by some of the churches. It's embarrassing as a Christian to read about how you've been treated. I'm from North Carolina, which is a south-eastern state, so it's me even more painful reading about your experiences. 

Realistically, I know there isn't much I can do to ease your pain, other than adding you to my nightly prayers. For what it's worth, I think you are a kind, loving Christian lady who deserves to be treated with respect, kindness, understanding, and Christian love. 

I'm afraid that the worst thing that has happened to me doesn't come close to what you've gone through. A couple of months ago I went to the dining hall wearing a new wig. It is my favorite one. It's ginger red, with a lace cap, and made from human hair. A guy walked up to where I was sitting, and wanted to know what that "thing" was on my head. Before I could say anything, he yanked it off my head and threw it down on my plate of food. A lot of people laughed, more than I thought would. Because there was a lot of food in it, I couldn't put it back on. I had to carry it out in my hands with food dripping from it. Unlike you I didn't lose a job, denied to attend my church, or that my baldness was contagious. I was just humiliated by a jerk. I have to admit that it did hurt my feelings when some of the people laughing at me were my brothers and sisters in Christ. The wig wasn't damaged, and after washing it looked nice again. But even though I dearly loved it, I can't wear it in public any more. I just don't have the confidence to wear it because I'm afraid people will point at me and laugh. I got off easy compared to what you've experienced. 

God bless and love,

Larry 

Comment by TurboK on December 13, 2019 at 8:07pm

It has been 14 years since God thought it would be funny to give me AU and on top of that, he replaced some of the hair on my head with Psoriasis. I had dealt with bouts of AA in the past, but the shots and cream would clear it up immediately. AA runs in my mom's family, but they get treated and it goes away without anyone knowing it was there. I am the only one to go AU.
When I turned 42, I lost all my hair over the matter of a few weeks. I lost my job and was told to leave the church I was attending.

I worked for a Medical Lab testing company, and they refused to learn what Alopecia. I was canned because I didn't have a professional appearance anymore. Some there also thought it was contagious.

I am not allowed in very many churches, simply because I won't admit that I did it to myself or prayed and asked God to give it to me. The church I had been attending told me to leave because they thought it was contagious and would not allow me to explain what it was.

I have been struggling with God recently, because I want to know what I did to deserve the hell I have been in for the past 14 years. One thing he neglected to give me was a means to cope with it.

I have been in therapy for the past several years, but it hasn't helped my hair to come back, and it hasn't stopped people from treating me like a second class citizen. There are just far too many people in this world that feel that ignorance is a virtue.

I do have to admit that things have been better since I moved back to the Midwest, because when I was in the Southeast, those people are just pure evil when it comes to situations like this.

Comment by Larry Barbee on June 1, 2019 at 2:11am

Hi,

I’m working on a book about baldness and the social and emotional impact that comes with losing your hair. It will be an anthology and I’m looking for contributors. It will be a non profit project. Any money that may come from sales will go to paying expenses in producing this book, and any other money will go to charities such as the National Alopecia Areata Foundation and the American Cancer Society.

I’m looking for Christian personal stories and essays about topics associated with hair loss such as wigs, relationships, coping skills, how God helped you with acceptance and embracing baldness.

If you would like to share your story please consider writing for this project.

Thank you, and God bless,

Larry S. Barbee

Comment by Mom2Ray on May 10, 2018 at 10:00pm

It's been a long time since I've been on here, but I wanted to share how great God is. My son (Ray) has had alopecia totalis for 15yrs now. We have dealt with many of the same things over the years with alopecia as most of you have...but the one thing I've always told him, God has a plan. Ray has always since the 8th grade talked of joining the military. His a senior now and in January of this year he went to see a recruiter. Being excited to serve his country he couldn't wait to join. The first thing the recruiter said, "Why you bald". Ray explaining his alopecia, the recruiter cut him off and said no. Being crushed, he went to another branch. Of course same thing happened. My heart broke for him, because this is all he talked about. I told him I was sorry, but God has a plan. The next week walking down the hall at school a recruiter from the United States Army walked up to him and asked if he ever considered joining the military, Ray still being disappointed said yes, but I don't think you want me. She said we do, let's talk. That week he signed up, the following month he went for his physical, and they turned him away because of his alopecia. Calling to tell me I could here the lump in his throat. That's when I broke, asking God why, even getting mad at God. The following day the recruiter asked us to get medical records, letters from his doctors and she was taking them to another military doctor to get a waiver. It's now the end of April and still had not heard anything, and all I could keep telling Ray and myself, as long as the door is still open, there's always chance. By then Ray was starting to give up on hearing anything and I was too. Then he got the call he got his waiver, and he'll be leaving for boot camp June 25th. God made a way when we didn't see how. God sent that recruiter who didn't give up,  and through it all God showed us favor. When we thought God showed up late, He showed up right on time. The world might see alopecia, but God sees greatness, a testimony, beauty, boldness and strength. I pray that who ever reads this (and look over my grammar...lol) that it encourages you, that it gives you hope, and to know God makes a way.

Comment by DianeM on May 10, 2018 at 9:20am

Hi all! As I was reading my Bible this morning, this passage really struck home for me and really encouraged me as I've been struggling with more and more hair loss. I hope these words encourage your hearts too! Do not give up, do not lose heart because we await a glory beyond all comparison!

"So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. ¹⁷ For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, ¹⁸ as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal." 2 Corinthians 5:16-18

Comment by Judy on March 23, 2018 at 12:56am

@HopelesslyFaithful -- I'm so sorry you are feeling so down. The good thing is that you are talking about it and sharing your feelings. It helps to reach out to others, especially fellow believers! Don't beat yourself up over having normal human feelings,,,you know, the ones as Christians we know we shouldn't have. Lol! God understands and wants you to bring it all to Him and let Him comfort you. I got my very first alopecia spot on my 40th birthday (how's that for a double-whammy!?!), and two years later, after steroid shots, foams, etc. etc., it all fell out. Followed by my eyebrows, eyelashes, etc. Talk about feeling unattractive. Like you, however, my husband is supportive and so were my kids. I've now been without hair for 13 years and choose to wear a wig. My life-changing moment came in the first two years as my hair was falling out in chunks. I looked up at that cross one day as I entered church and realized how very little of a sacrifice this was for me in return for all Jesus sacrificed for me. And I then and there fell to my knees and thanked God for this affliction not being fatal as I had four little ones to care for. Don't get me wrong -- there are days I just hate this disease and miss my long, thick hair so much, but gratitude turns that around. I see this as a way to witness to my children and others and to offer something up as suffering for the good of others. I'm sounding super-preachy and I don't mean to...I really don't. I guess I just think that sometimes afflictions are the true blessings God gives us because they offer a path to greater holiness and closer relationship with Him. But again, remember that is so okay to be sad, or angry, or despondent sometimes. Just keep going back to Him in gratitude and love. You are beautiful, inside and out, and not having all of your hair doesn't change that -- it enhances it! Have a beautiful Easter!

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