New here, VERY depressed!

Hello, My name is obviously, Amie. I guess you would say I'm at mid point, maybe a bit closer to being bald. I found a large bald spot on the back of my head about 5 months ago and now I'm getting more and more bald spots all over - top, sides and the back is probably 90% bald. I'm scared to wash my hair and have resorted to VERY gently washing it in the bath tub, no more power from the shower head. I live in a windy area and it scares me to walk my dog in it. Everything scares me. I am the Client Services Manager for an insurance company - I also work the front desk. I am the first impression. I still go in with my head held high - really so no one can see how wide my part is! Each night I come home and cry. 

At what point do people shave their head? I can't afford a wig yet and I look HORRIBLE in hats! Anyway, I'm depressed and was hoping to chat with people to find out what they did to cope with this. I haven't figured out this page yet. Someone told me no one chats. I find that odd - aren't we here to help each other??

Ok, well, I'm out of here now. I'm not finding any help on a page that calls itself "alopeciaworld" - very dissappointed. 

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Permalink Reply by Amanda Banana on May 6, 2017 at 12:25am
Great reply. I wish I could "like" this!
Permalink Reply by Bonnie Piper on May 5, 2017 at 6:45am

Hi Amie

I am new to this site and just wanted to say I am so sorry. The same thing happened to me about 3 years ago. It started with a tiny little round bald spot no bigger than my little finger nail and then whoosh within 6 months all gone - completely bald as an eagle.

I was so like you - i would dread washing my hair as it would come out in handfuls. When my head became all hot and itchy I knew I was in for some big hair loss.

It can be a very lonely and scary time and my heart goes out to you as I remember this stage as if it was yesterday. The only thing I can say is that 3 years on every day gets a little better, you start to learn to live your life again. I am not at the stage of letting people know and still go to great lengths to hide it from my daughter but I am starting to feel a little bit better about me. 

There are some great hair pieces out there and I have met one amazing wig specialist along the way in the UK who is trully incredible and kind. 

So I am here if you need a chat/advise/help with anything.

Thinking of you

Bonnie 

Permalink Reply by Tallgirl on May 5, 2017 at 11:19am
My family bought me three wigs in my teens. Friends have given me six wigs, and one lady was just giving her old wigs away at a wig salon. Ask friends and relatives to help get you some synthetic wigs, and have them even go with you to choose. Make it a special day, with lunch!
Permalink Reply by Pat on May 5, 2017 at 11:08pm

Hi Amie, it's understandable you are feeling so low...losing one's hair is traumatic. As a long time alopecian I can only say that coming to terms with hairless is a process and each one of us seems to handle it our own way. I can relate to your feelings so much. I was also scared, terrified actually as I continued to lose my hair during a time when there was no internet and I felt extremely alone. Even though my husband was supportive I could tell he was as scared as I was. A few years ago the chat line was quite active. I have been away from AW for some years due to family situation but recently looked on chat again and it doesn't seem so used. Also we are from different parts of the world and when we post others may not be around. I live in Australia by the way. Please don't run away from AW, it really helped me to reach out and talk to others in the discussion page..people will answer you there. This is such a great resource for us, I wish it had been around when I was losing my hair. Big hugs and don't give yourself a hard time for being depressed as I would say most of us have gone through similar feelings...xx

Permalink Reply by AileenC on May 12, 2017 at 9:20am

Hello Amie

I am sitting at the PC crying just now due to the terrible roller coaster I am on.

Diagnosed with Alopecia Areata 3 weeks ago.

I have a fairly noticeable bald patch on the side of my head and it is getting bigger every time I wash my hair. Clumps of hair are coming away.

I bought my fetching green beret in Paris the week after being diagnosed :)

The last 2 days have been really weepy for me.

I am 52 years old so I think I am tough enough to brazen it out.

I go out with my bald spot visible and just think Fuck it.

Other times I try to cover over the area with rockabilly scarves etc.

I am fighting to remain positive but I know how hard it is.

It has really made me empathise with a lot of people in a very short space of time.

People will always love you for who you are and not how you look.

I think people who are aware will empathise with you very much too because i'm sure everyone is aware how devastating it can be.

I think you always have to try and find the humour in these situations too.

It all helps.

Best wishes

Aileen.....x

Permalink Reply by Tess on May 15, 2017 at 11:45pm

Hello Amie,

I can't tell you how sorry I am to hear what you are going through. I'm completely bald - so I can say with certainty that I understand. Please don't leave the group forums. I went to another site "her alopecia" and I have gotten practically zero support there. The posts here, even though this is my personal first, have been very helpful.

I know about scared. I couldn't eat for a month when this happened. I lost ALL of my hair in two months. ALL OF IT - gone. It's terrifying, and gut wrenching. That was only 8 months ago.  Let's talk about adjustment - funny ha ha. I'm not adjusting. I'm flying by the seat of my pants. And no, I'm still not brave, and doubt I'll accept the fact that my head is cold at night. It suck-eth.

I finally saw a specialist this week. It took from December 2016 to May 2017 to get in to see a specialist at University of Utah. He offered three courses of treatment - plus a possible clinical trial - for what I have - alopecia universalis. I'm posting this here, because I see very few people stating what it is that they are trying: 1 - Cyclosporine 2 - a combination of statins called Vitorin 3 - a mixture of topical clobetasol, protopic and tazorac gel.  I haven't even filled my prescription, so I don't know about dosages. 


I have zero insurance so option number two is the cheapest at about $90 a month taken as a generic mix of ezetimive and symvastatin....I know nothing about any of these drugs or their side effects. I'm about to, though.  I also take many vitamin supplements, including biotin, zinc, iron, magnesium, folic acid and D3. 

The best thing I did was get a wig as soon as I could tell that I needed it - I am an adjunct professor, and standing in front of a group of students with a balding head was excruciatingly painful for me. Vogue wigs has great prices. You don't have to spend a fortune, and there is an angel on youtube called Blondielocks, who gives all kinds of advice about being brave and loving yourself and sporting a wig with elegance. I frankly don't know what I would do without her. I need to let her know. I'm not one for practicality. This has been emotionally damaging, and anyone who throws a practical remark at me, generally just ticks me off and makes me hurt more (we're all different).

You can decide later if you don't want to wear a wig, but it is making the transition a lot easier for me. I'm not sure what I'll do, but I know there a lot of people out there who are full of beans. THey'll say anything without thinking - and that includes doctors. When someone says something that hurts your feelings - remember that I said they are meanies and not thinking today. I care, and I am truly sorry this is happening to you. I wish I could wave a magic wand and take it all away.

You are not alone. Hugs, Tess

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