Alopecia World
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My first blog- what it feels like to have alopecia
hey!
I am generally a very happy person with a great outlook on life... but I at times I get really down as everyone here does.. so I wrote a bit of a poetic piece to describe the pain ..
What it is like to have alopecia
Losing your hair, losing your femininity
Losing your normality
Years of teasing and feeling like you are being stared at
Having to realise that you will always feel ‘fake’
Hiding behind your wig, fake eyelashes and crayoned eyebrows
Feeling that you cannot feel sorry for yourself, others have no hair and have SUFFERED to be in this place
Wondering if you will ever have the feeling of running your fingers through your hair
wondering if there will ever be a day where you can not worry about your eyelashes coming off in the corner,
your eyebrows rubbing, or sweating off
Your wig may LOOK real, but it doesn’t FEEL real
After one day your head will sweat a LOT, it will make you feel dirty
You will never feel clean
You can never just easily have a shower and feel clean and be ‘natural’
Natural to you is feeling like an alien, looking like a blank canvas
Why me?
Us women already have to have enough insecurities already, without this added one
Wondering whether people are looking at you in a good way or because they can tell what you are hiding
Feeling deceptive
Telling people of your alopecia, and watching them at first look at you differently
Telling the opposite sex and the fear and nerves that consume you in those moment, waiting for the reaction
Your partner telling you that you are beautiful, and feeling like you are only beautiful CONSIDERING you have alopecia and still look okay
You will never be able to swim again in comfort with eyelashes, eyebrows or hair
You will never be able to go to theme parks
You will never be able to take part in extreme sports
You cannot even exercise without worrying
Your wig could fall off infront of EVERYONE
Humiliation
Anxiety
You can not do what a normal person can
Everything is more difficult for you
The simplest thing in life- like putting your hair up is the most difficult thing for you
I dream of having hair, of having my OWN eyelashes that don’t fall off, or that actually are on the bottom of your eyelid too
dreams of having hair on my eyebrows, dreams of washing my face and being able to close my eyes and wash the entire thing without losing all of me.
Dreams of putting on makeup, or moisturiser without avoiding my eyebrows and eyes.
Dreams of not being scared of contact sport
Dreams of being a normal 21 year old who isn’t limited by something
Dreams of feeling pretty
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Comment by Klo on June 5, 2012 at 9:54pm
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Nicely said!!
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Comment by S alopecia on June 5, 2012 at 11:20pm
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thankyou!
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Comment by Sheena Tha Cody on June 6, 2012 at 12:10am
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made me cry dreams of feeling naturally beautiful is the thing i long for so much being able to wake up and brush my teeth put my hair in a messy ponytail and walk out the door feeling secure about myself and not like everyone is staring at the hairless lady wondering whats wrong with me
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Comment by BTB (John) on June 6, 2012 at 5:17pm
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Yes you have said it all very insightful and what we have experienced too!!!
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Comment by AZMom on June 6, 2012 at 8:48pm
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Everything you have said is very true--but I refuse to be defeated by alopecia. I have been on a cruise, been swimming, been on a water ride and go to exercise several times a week. I have bought waterproof eyeliner and learned how to do my eyebrows so they stay on for the day. I have several wigs and I do not really enjoy wearing them, however, I have to say they actually look better than my bio hair did. I was very depressed the first couple of months, but soon realized I could either get going or sit at home and not go anywhere. It still takes courage to go out and see people I haven't seen in a while, but we have to pick ourselves up. My husband will not let me mope--he and the rest of my family have been a great support system and I hope you have people in your life who give you the encouragement and support that you need. Good luck!
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Hey azmom . No I totally agree, I have tried to do everything and feel as normal as I can despite it . I have never his my condition and when I feel comfortable tell anyone about I . I have been in a relationship for three years and sleep with a beanie and no eyebrows and lashes . I don't know if I will every have the confidence to go bald but I am very open. I go to the gym 5 times a week , but there are a lot of limitations . I guess I wrote this because I don't like pity . I show everyone how strong I am and that I believe beauty is the inside , but every few months I have a down moment and I think here people can truly understand . Can I ask how u do Ur eyebrows to stay on ? Thank you :)
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Hi S--I think we all are quite alike! I sleep with a beanie (I got them from Slumbercap.com) and I will never be a person to go bald! That is just not me at all--I guess others are comfortable, but I know I would never be! Sometimes I have really bad days as well--and I think why did this happen to me? For my eyebrows--I found a tutorial on the internet EyelineHerBlog on you tube and that info was very helpful. I ordered a product from Cheryn.com which is an eyebrow sealer and it really works. There are so many tutorials on makeup for all of us girls with alopecia and I've watched almost all of them, I think--I am a make-up junkie and also an aesthetician. I am an expert in removing hair and waxing--too funny! Oh well--good luck and have a great day tomorrow!
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Comment by Nikki Boyd on June 7, 2012 at 11:57pm
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this is nice and I feel what you feel but i know its going to be okay
its hard sometimes but I have to relize things happen for a reason.
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Comment by Jessica on June 8, 2012 at 12:48am
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"dreams of having hair on my eyebrows, dreams of washing my face and being able to close my eyes and wash the entire thing without losing all of me."
so well put!! it's the little things ya know.
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Jessica- u are right... the simple things like putting your hair up and washing your face or being under a shower, is the most irritating part!
Thankyou Aimee :) I may have to try the tattooed eyebrows one day
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