Alopecia World
www.alopeciaworld.com
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.
Replies to This Discussion
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Permalink Reply by Amanda Banana on
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I don't think anyone really uses the chat because usually there are not that many people online at the same time. That's why I like the forums. I find it easy to browse the forums for a "group chat". There are many discussions about this very thing as opposed to the 2 people online who aren't actually paying attention.
Sorry I can't be any help, I am not at this point. I hope you give this site more time, you may not always get instant answer.
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Permalink Reply by AmieS on
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Thank you. I will, I was just a huge mess last night and needed to chat w/someone! Thank you for seeing my post!
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Permalink Reply by Alo-mom on
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Hello, I truly understand what you are going through. I am the mother of a daughter in her late 20"s that lost all of her beautiful long brown hair. This was devastating to me, yet she has taken it beautifully. I think that my learning about wigs and eyebrows and lashes and being sure she had what she needed without stressing is what helped her make it through this. You can make it through this too, Please friend me if you would like and I would be glad to chat or talk. I am a phone support person for the NAAF organization and am there to help others through this. Big hug to you. I am off today to speak to ladies about legislation regarding health care and how it relates to Alopecia and to give them a lesson what what to look for in wigs. I am also going to share my journey with them on how Alopecia has effected my life and how my passion is to help others. Michael J Fox said, "happiness comes in proportion to acceptance", my way of acceptance is helping others. All my best.
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Permalink Reply by Tricia on
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Hi Amie,
I'm barely active here or anywhere else for that matter but did see your comment just now in the chat.
My advice to you is to see a dermatologist who can treat your alopecia and fight for every strand of hair that you have. When they start approving some of the drugs currently being tested for our condition you may have better success at treatment if you haven't lost everything. And start looking for a therapist so you can have some face to face professional support. I wish you the best.
Tricia
AU
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I've seen every type of doctor there is. They all say the same thing - basically there is nothing to prevent or stop Alopecia. You can try this/that, etc. Maybe some hair will grow back, but don't count on it.
I'm just here to learn how to cope with this, not looking for cures!
Thanks for your reply!
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Permalink Reply by Tom on
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Welcome Amie
I've had AU for forty years so I have been where you are now. I know your depressed
I would suggest finding a Good Dermatologist and find out what treatments would work for you.
You could wear a wig to work. They have beautiful wigs and many ways to fasten them so they don't come off accidentaly. It's my experience that it's better to talk to an employer and explain the condition. Almost always they understand and support you. It's better to tell people rather than hide and hope no one notices or says anything.
Trying to hide only made me more depressed and terrified. If some one says wow you have perfect hair tell them you have alopecia and it's a wig.
I wish you luck in the future and remember that your not alone. God bless
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I've seen everyone there is - and I don't have insurance. I've talked to my employer, who is very sweet. I agree - I'd rather people know about my condition than trying to hide it.
Thanks for your reply!!
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Permalink Reply by CCV on
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Hi Aimé!
That was me last year. My bald spot at the back is my head appeared in March and by the end of April, I had lost 90% of my hair. I shaved it off on Mother's day because I couldn't handle the sight on my comb, pillow and tub. I saw a Naturopath who put me on Probiotics, Evening Primrose oil and Fish oil capsules. I also tried to follow the Candida diet which was very difficult. She also encouraged me to see an endocrinologist who told me that I was deficient in vitamin B12 and D3. My hair is slowly growing back. I have seen considerable regrowth especially vin the last 6 weeks. When I think back at my state of mind last year at this time, I just cringe. I was in a very dark place. My advice, change your diet. Eliminate gluten and sugar. Meditate, the body is a remarkable machine and has the ability to heal itself. Headcovers sells very cute hats and caps and YouTube has numerous videos on headwraps. It 's not easy but from my experience, most people are very understanding and encouraging. Good luck to you!
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Permalink Reply by Sad1995 on
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Stop giving people stupid advice. Gluten and sugar have nothing to do with alopecia.
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I agree. I've been to every type of doctor/practioner there is. There literally is nothing to stop or prevent Alopecia. The only advice I'm looking for is how to cope with this!!
Thanks!
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Thanks, but I've done all of those things. I'm also taking Bamboo Extract w/70% silica, as well as Biotin, using CBD oil. I've seen DOM's, acupuncture, homeopathic practioners, you name it. They all say the same thing - try this, try that. But in the long run, there is really nothing to prevent or stop true Alopecia. I'm just trying to learn to cope with what I have.
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Hi Amie,
Sometimes I hesitate to respond to people looking for help with coping because about 3.5 years after my diagnosis, I am honestly still not totally at peace with alopecia. I remember being very depressed and as I reflect on where I am now, I can think of a few things that have helped me to become "mostly okay" with alopecia.
First, I'm glad to see that you know there is no cure. Understanding that has saved me a lot of wasted energy. Second, I think it is crucial to be open about it. Again, it looks like you have saved yourself much grief. Next, meeting with other people has been paramount for me. Try to go to a NAAF support group if one is in your area or Bald Girls Do Lunch . If that is not possible, searching online for pictures of women with alopecia has helped me so much. I'm not really into social media but I love occasionally browsing on instagram for this reason. The saying goes "you can't be what you can't see" and seeing pictures of women who are completely or partially bald due to alopecia and yet living a happy and full life has helped me to strive to do the same. The last thing that has helped me is time. I don't believe hair is an accessory, I believe it is a body part. There is certainly a grief process that we go through. Crying and feeling sad about the loss was part of the process for me too.
I shaved my head when about 80% of my hair was gone. Not much more fell out after that. There really is no right or wrong time to do it, when it feels right to you, go for it. It may never feel right and that is okay too. I also didn't like the way I looked in hats with hair and without seems to be even worse. Hair used to be very important to me. At first I was striving so hard to look the way I used to, but it turns out wigs did not help me at all. They just felt like a new problem. When I discovered scarves, it felt like the best option for me. There are plenty of youtube videos on tying scarves, my favorite have been Wrapunzel.
I hope this helps in some way.
Becky
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