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first off, I am so excited to have found this website, I have had alopecia universalis for over a yr in a half now, and I have never had the opportunity to talk to someone who has been going through the same thing.
From the looks of it, a lot of people on the website seem to be dealing with it great. At first I thought it was temporary but I have seen 3 different dermotologists who have said that there is always a 50/50 chance that my hair could grow back and there is a 50/50 chance that it won't. I cannot seem to come to terms that It will never come back, and there has to be something to cause it, right? I have gained a 100 pounds since i was diagnosed from depression and have not had the confidence to go out in public without a wig. Am I juss being vain? Has anyone with universalis ever had their hair grow back??

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Permalink Reply by Nancy on February 24, 2011 at 1:20am
Hi Kristina,

I'm 26 and have went from AA to AU in less than a year! And often time I would always have a patch or two that would grow back on their own so when ALL my hair fell out I freaked out, i mean REALLY freaked out especially when I finally shaved it off, thinking I was only doing that do even out the semi-growth I was seeing, only for it never to come back. Months later the hair on my body stopped growing and most tragic- the eyebrows and eyelashes disappeared!!! It is really not about vanity. You see yourself in a certain way and i do feel a loss of a piece of myself without my hair! and i mourn her everyday...It is SO hard to tell yourself you are still the happy, confident person that you were, when you're mind is constantly worried about your wig being crooked, how damn hot it is, if your eyebrows are smudged, if someone else has JUST noticed what is it it about you that just looks "off" and have them notice it's because you don't have eyelashes, or baby hair coming from the sides of your beanie. I struggle every day with acceptance and denial. Right before this happened was when I finally started feeling truly happy with the way I looked and this is such a blow. People will NEVER understand because they'll never be in our shoes. It's interesting that if you are seriously ill, people empathize, but when you have a physical defect, they seem to JUDGE you. I'm not even sure how to elaborate on that, but it's just how I feel. But we are so young and have the rest of our lives to live, we cannot wait for our hair to grow back to going back to living a happy life now or we could watch months and years upon years go by and when our hair does/doesn't grow back, we won't want to look back and think. Well, now that my hair is back-life is good. Because it won't be when we've let the rest of it slip by. And i try to think of it that way instead of sounding like a cliche. And while people may judge us while we are in their sight, the moment we are not, they move on with their lives and we were just a momentary distraction. They don't actually care about us, so we really must be the ones who care for ourselves, and each other.
Permalink Reply by Pamela Rosse on February 24, 2011 at 3:08am
Hi Kristina
First let me say your not vain, you are beautiful. 
I have been Universalis going on 2 1/2 years now, in that time frame I have gone through an array of feelings as well as ups & downs. I stRted to see a counselor to help me gain some perspective & get some tools to cope. 
Confidence my alopacian sister will come in time it's different for each of us. Your grieving it sound funny or odd to some, to grieve over hair; but it's a traumatic loss one it takes awhile to get over. We also are getting to know a whole new us over again. We look in the mirror at a stranger & ask ourselves who can love this? In time we find ourselves we love again if were lucky our partners love us all the more. 
I am still waiting for my hair to grow back.
Hang there, you have found a great site. 
Who knows someday you just might take that deep breath open the door & walk outside ah natural, it can be quit refreshing. 
Once again hang in there my alopacian sister.

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