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Posted on September 6, 2013 at 8:30am 7 Comments 2 Likes
When I think of the word Alopecia, I feel an intense feeling of loss. It’s more than a loss of hair; it’s a loss of self-worth. The discouragement it brings takes every breath of courage and suffocates it. I wanted to write about this disease so people will grasp the severity of what’s happening to over 5 million people in this world.
I started losing patches of hair when I was six. At this time I lived in a different country, Wales. I remember the kids teasing me, saying that a dog had…
Posted on January 31, 2013 at 12:30pm 2 Comments 0 Likes
I wanted to share a piece of my personal journey with Alopecia. When I need to work through things...I write. The process is healing.
Courage to Believe
Standing within a shadow of illusion
Not knowing my desir
A journey lacking fulfillent
A soul without the fire
Suddenly I realize what a waste of time
How miserable my world has been
Searching for reasons to understand
What haunts me deep within
Then I found the person within me…
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Ttyl,
Susi
Hi, Emily
Thanks for your message! No problem. I'm in grad school taking 3 courses and working full time so I know busy. :) I tell myself that I can control my part of how I look if I can control my weight so I'm concentrating on that now but I seem to be at a plateau. I need to lose about 60 lbs. to get to my pre-pregnancy weight. Some goal! It'll be interesting to see how I feel about myself than. Im sure, better anyway. How did you lose 80?
We all have strength within us and it comes out when we most need it. I'm definitely a lot stronger than I was in those early years. I'm grateful for that and sometimes I even feel grateful for the Alopecia. Imagine that.
Hey Emily!
Let me know how you like "If Your Hair Falls Out, Keep Dancing!"
That's great that you also are thinking about writing a book. It's wonderful to share experience and knowledge!
Hugs, Leslie Ann
thanks emily,my good friend who has ahd alopecia universalis since she was 13, said"if a man has a soul, it 's not going to matter." dating is hard with alopecia, but i will try to be as open as i can. it's hard!!amy
Hello and welcome, Emily!
How are you today?
Leslie Ann
Hi, Emily
First, here's a smile from me: :) I certainly have had my share of emotions and issues with alopecia and sexuality. I'm single now and I know it's because I'd rather not deal with it... for now. But that's not the only reason though. When I was young I wasn't strong enough to be on my own; now I'm too strong to be with someone. I was married when my hair first starting coming out. My son was about a year old. I can remember the day, the minute, and where I was when I saw my first spot. The trauma is emblazoned in my brain. What happened shortly after was to have a lasting impact on the way I deal with alopecia and men. My husband left 4 months after that day when I looked my worst. I know NOW that it had NOTHING to do with my hair loss. But that's not how I saw it for many years. I related the two events as being causal. Hair left, he left. So I closed off. When I had a human hair wig that made me feel good and sexy like normal, things were OK in my relationships. Then I gained weight and I thought that's why I'm closing myself off from relationships. I've had "men" (bear with me, I have to use quotes here!) say that they "can't take it," "it's unattractive," blah, blah, blah. Good luck to them. Someone once said to me that alopecia is a good litmus test. It'll weed out the losers. I think closing off is a natural reaction. It's self-protective, isn't it? We're reacting to something we can't control. We've changed--or I should say alopecia has changed us. (And this is where we have control--how we live and what we do, how we love and accept, etc.) We may be able to fake things (and I don't recommend any faking!) but feeling sexy we cannot fake. We either feel it or we don't. What I also think is that it will come back to us. If we ask people--family & friends--to be patient with us we should also be able to ask ourselves to be patient with us. They say communication is the best aphrodisiac. Talk to your husband honestly and then listen him be honest. My Mom used to say "time heals all wounds." It took me a lot of time to realize it's true. Hang in there, baby! :) We can do this.
hi emily, thanks for your note..i am single and wear a wig, and i always struggle with telling boyfirends about my condition. any suggestions?
Hi, Emily
Confidence is the hardest part. I lost my self-confidence along with my sense of humor and my ability to be very social around people. I retreated into myself, stayed home, and added Alopecia to my other reasons for my depression. I. too, have gone through several struggles in life. I'm regaining my confidence and my sense of self but it's taken a while. There's a mourning process and you're correct in knowing that even though we have people in our lives who are supportive and love us no matter what, WE have to regain ourselves through this dramatic life change. Those people help but we have to be the ones who look in the mirror and tell ourselves that we're beautiful. It will come. We are strong. :) With me, getting older is becoming my ally. I want to be happy (or happier and more comfortable) with myself in my 50s. So I have goals that I'm working toward, Alopecia being just one. I joined this site to see how other people deal with Alopecia and I'm glad I did. There's inspiration out here. We help each other along in this journey.
Hi, Emily
You sound like me. I got AA when I was 25 and now have AU at 49. It's taken me a long time to feel better about myself in general and having Alopecia specifically. I have a great therapist and supportive friends. I recently starting telling just random people that I have AU and it's been a freeing, positive experience and has helped in my healing. Alopecia changes your life. I've learned a lot about myself and other people in these 20 years. I'm here if you need to talk. :)
Maryanne