Alopecia World
www.alopeciaworld.com
Vent time - just let it out.
I'll start off first...
This is coming from someone who has AU only for 9 months - everything happened so fast and i'm still in work in progress with EVERYTHING RELATED TO AU.
But i hear others in the same shoes - putting on brows, eye lashes, and wigs then saying you're beautiful and don't need to add anything. It gives me mixed emotions; like its so hard find ladies that doesn't have any false accessories on.
Maybe it is frustrating for me because i was never that person to wear false anything and have no clue how to even wear makeup. So this new lifestyle was threw at me without a warning - i feel like i'm Ms. Potato head; i don't feel like a woman at times.
I just wish i saw more women without false lashes and/or eyebrows more often.
Thanks for listening and allowing me to get this off my chest.
Replies to This Discussion
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Permalink Reply by Jan on
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I had Alopecia Arcata for 8 years before losing all my hair. I like your analogy of Mr. Potato Head better than my Golum from Lord of the Rings, in other words feeling like a blob is on your neck. While I decided never to wear a wig, I had always been a make-up wearer. For me personally, do what makes you feel good about your self. Even the most made up AU ladies have their down and ugly feeling days. While none of my friends wear makeup, I feel much better wearing makeup. I was very fortunate that my eye doctor asked me if I would like to try a prescription to see if my eyelashes would grow because she could see some follicles. I decided to go to the expense and try. Funny, my dentist who used this product, Latisse, it when she went through chemo, told me to use it on my eyebrows, they too would grow back. All of us are just trying to survive day to day. I hope you find your own way to get through this mentally devastating disorder.
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Hi Denise
I totally understand your frustration and wish to see others who are the same as the you. Thank you for sharing your thoughts and venting to us here. I have to admit that being a work in progress in relation to AU is something that we all go through as it is a visible difference we need to find a way to cope with in comparison to the majority of others who don't have this difference.
I'm an almost 50 year old woman and have had AU since I was 11 years old, AA since 3 years old. I choose not to wear wigs, make up or false brows or lashes. I do wear scarves/hats/beanies to keep protected from sun/heat/cold when working or outdoors. All I can say to you is that there definitely are women with AU out there who go without false lashes/eyebrows/wigs but you don't necessarily need to see this to make your choice whether or not to do the same. The decision to is all yours and those who make comments or look or stare etc are truly not worth thinking about (easy to say I know, harder to do). Women are not defined by hair on their bodies or not having hair on their bodies. I can feel your struggle and pain/frustration you are experiencing with your identity and empathise as I definitely did experience this too and found it frustrating to see what seemed like most women with alopecia choose wigs, false lashes/brows/makeup. The choice is yours and your identity is what you make it. We live in a world with so much diversity and much more acceptance of difference these days compared to other times. I remember reading the Beauty Myth by Naomi Wolf in the early 90s which really helped me with my struggles and identity as a woman who didn't conform to beauty standards, not having hair being a part of that. I would recommend reading it or similar books/articles on the subject published since.
Having AU is certainly an additional challenge and difference in life which we didn't choose and the journey to fully embracing and accepting our physical appearance (whether that be to wear wigs/makeup/false lashes or not) is one hell of a journey to take and reconcile within ourselves. Michelle Law's TED Talk 'A Bald Woman's Guide to Survival' https://youtu.be/JvR8p0nHnww?si=YHlN9bcz2ez_qAH1 is also something I recommend watching plus other ones of women with alopecia and their experience with it (search TED Talks alopecia).
You are not alone in how you feel or the frustration you are feeling.
Big hugs, love, best wishes and strength and support to you with whatever you choose to do or not do Denise, from one AU bald woman who chose not to wear wigs etc. to another (who may or may not choose to do so as well).
And remember you can always change your mind and look throughout time.
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Permalink Reply by Denise on
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I appreciate the reminder which I do and omg thank you for adding resources as well.
Please note - the link didn't work but I'll look up the title
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The first time I saw someone with AU going without hair my heart LEAPT. It was a big surprise, that response, and it has continued ever since. MY TRIBE, or something. I was still wearing hair at that time but I wanted to stop. It felt so fake. I stopped wearing hair at the beginning of the pandemic and haven't gone back. All summer I go bareheaded and all winter I wear cozy caps. When I pass people I try not to look at them because so many stare to try to figure out what they are seeing. I got AU at age 60 and a few years later I got eyebrow tattoos and my eyelashes grew back. I am grateful for them because I think it's good for my eyes. It doesn't stop people from staring. I WISH EVERYONE WITH AU would go bareheaded so that it becomes another version of normal. BUT I did wear my hair, re-cut to look more like I did with hair, at my daughter's wedding. I am very happy with that choice. I wasn't a distraction and the pictures look great. Maybe I will put my hair on again now and then. I do wear makeup and earrings. Looking like I'm female is important to me, for some reason. I would like to study that phenomenon sometime.
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I definitely make sure to have my nails polished and earrings most of time unless I forget them. But yes I'm the same Ill look down but getting better because I'm aware of what I'm doing.
My goal as of right now is get back social because I stopped doing my normal going out and exploring new events locally.
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Permalink Reply by 559Courtney on
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Courtney’s Inspirational Story
“Tragedy Should Be Utilized As A Source Of Strength”‘Tragedy should be utilized as a source of strength.’ No matter what sort of difficulties, how painful experience is, if we lose our hope, that’s our real disaster.” -- Dalai Lama XIV.
Strength is defined in the dictionary: ‘the quality or state of being strong; bodily or muscular power; mental power, force; moral power, firmness, or courage.’ On the contrary, a disaster is defined ‘a calamitous event, especially one occurring suddenly and causing great loss of life, damage, or hardship.’ Those directly impacted by a disaster are never more alone then during this time of crisis. Their pain and suffering is immense. As time goes on, their pain and suffering continues to build, declining off the cliff, into hopelessness and despair. They begin to question why so much could happen to one person. They question how much loss could a person endure. They ask why did this happen to them. They feel completely alone. I’m here to tell you, YOUR NOT ALONE!
There are others with this difficult auto immune disease! Like myself, I’ve have had Alopecia Areata on and off now for about 8 years. I have been bald, again, for about a year now. I remember the first time I had alopecia and went completely bald. I felt lost, uncomfortable in my own skin, and had no idea what to do or who I was supposed to talk to about my hair loss (or if anyone could even relate to what I was going through). My Alopecia Areata started in June 2006, where I lost about 5-6 patches of hair in the back of my head. By December 2006, I went bald from my ears down, my only hair I had was the top of my head. I made the decision to shave my head in hopes that my hair would just suddenly grow back. I was wrong… Eventually, I went completely bald, not one hair on my little head! I saw numerous doctors, dermatologists, had plenty of tests performed, and even steroid injections in my scalp all in hopes of just simply “getting my hair back”. I hid my Alopecia from the world. I wore wigs, didn’t’ say anything to friends or strangers, and refused to go swimming or do anything that involved me having to take off my wig. I was embarrassed for something that was completely out of my control. Embarrassed to simply be me… bald Courtney. I managed to battle through it, and after over 1 year of being bald, my hair finally came back in May 2007.
I’m still unsure as to why my hair just suddenly came back after over a year of being completely bald! Maybe it was stress induced, maybe it was medication, or maybe I just finally being content with my new “Bald” look. After 6 years of being alopecia free, last year July 2013, something triggered my alopecia, and it came back. This time, I lost my hair the opposite sections of hair that I did with my first experience with Alopecia. The second time around, I lost small round patches in my bang area, eventually resulting in losing my hair from my bang line all the way to the crown of my head. Despising the way I looked in the mirror, I decided to shave my head again. This time, though, I promised myself it would be different. Alopecia was NOT going to control my life the way it once did!
While I was shaving my head for the first time with my 2nd episode of Alopecia, I remembered something that had happened to me with my first experience being out in public, bald, with my alopecia. A few months before my hair came back during my first episode, I planned a trip to go to the lake with some friends (most knew of my alopecia, but we never discussed it). Before the lake, we stopped at Walmart. While pulling into the Walmart parking lot I realized, “CRAP! I don’t have my wig! I can’t go inside like this!” I had no choice; I had to go inside Walmart, for the very first time in public, without my mask, without my cover up….without my wig! While inside Walmart, I accidently bumped into a little girl. As I bumped into the little girl, her mother dramatically pulled her child away from me stating “No! Don’t touch her! She might be contagious!” Words can’t express how humiliated, insulted and disrespected I felt! Contagious? What the @#$%?? This woman truly had no clue what I might have, but she misinformed her child that ”I might be contagious”. Looking back on that experience, I’ve realized just how uninformed people really are Alopecia Areata!
With that being said, it’s one of my 2 personal missions I now have: 1. Alopecia Community Awareness, and; 2. Provide Information, Support and love to those affected by Alopecia. Experience teaches you lot, and so far I have learned not to leave those special experiences behind, as they don’t come often. The second time has been so much easier for me just being upfront, honest and being a part of the NAAF. It definitely made me realize that I'm not alone after all!
Recently, I participated in the First Tier of the Alopecia Areata Registry, Bio bank and Clinical Trials Network, and was invited to participate in the Second Tier of the Alopecia Areata Registry at University of California in San Francisco, California. The process involves making an appointment to see Dr. Vera Price and her clinical team. During the appointment they will perform a brief dermatological exam and take photos work to be sent to the Central Registry Site in Houston, Texas. In addition, an optional sub-study to undergo two punch scalp biopsy samples, and to provide blood samples. The skin and the blood samples will be sent to Dr. Angela Christiano at Columbia University in New York. The samples will be used to find genes expressed in Alopecia Areata. Some of the blood samples will also be sent to the Central Registry Site.
I will be completing the biopsy and blood samples in January 2015, at the University of California in San Francisco, California. Although I’m very nervous of the biopsy procedure that will take place, I am staying positive in knowing that the samples being taken are to better help researchers finally find a cure! Being a part of that cure, is the most meaningful thing that has ever happened in my 28 years of life.
Alopecia affects everyone differently. This means all fellow Alopecian’s, are unique, and special in their own way. It’s just a matter of ignoring the stares (most of them are only staring at your beauty, not your faults), realizing you’re not alone (there are 6.5 million people in the US affected by Alopecia), and embracing your new “Alopecia Bald” look. I know I will be faced with more challenges with this auto immune disease, but I also know that with faith and being content with my hair loss, I am able to overcome any obstacles that come my way. Whenever I find another bald patch, I always remind myself: “take one day at a time, things always get better”. Be happy with yourself, you’ve come a long way. Let Alopecia Areata be your beautiful cure!
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Thank you for this - definitely a lot of ups and downs. I'm doing my best to be somewhat out about it but I'm still not knowledgeable to be involved in a conversation especially since I know I'll make untruthful facial expressions.
One of my happy purchases is an Alopecia support group jacket - I'm doing things to help people staring to at least read a little.
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Very sorry to hear this but stay positive always. Our son when he was 19 underwent several alopecia and happy to share what we did as parents to finally help him cure. Feel free to email me at desaitushar@gmail.com. Hopefully wish and pray no one ever suffers from alopecia since we have been through hell and know how bad it affects the person mentally including severe depression.
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Permalink Reply by Solange De Santis on
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Dear Denise,
Vent, my friend! That's what we're all here for. I think it's important to point out that AU can be a journey - but not to a single point. In 26 years with AU, I've changed my appearance according to certain factors. When it first occurred, I was horrified, wore scarves, wigs, etc. Then about four years into it, I got my eyebrows tattooed and decide to go au naturel - no wig. And I was out and about - got a good job, was on television occasionally, etc. Around seven years ago, I got a different, high-profile corporate job and decided I didn't want to be explaining all the time that I didn't have cancer, so I "wore hair." Now, I wear hair when I don't want to be bothered by unwanted looks and comments, but go au naturel at home, in the homes of people I know well, and sometimes outdoors with just a hat. See? It's kind of a case of "it depends." And it is very much YOUR choice. Best of luck to you. We're on your side.
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Yes - i definitely still going through my ups/downs. I still get triggered but with the support groups; i'm just learning how to handle them. But yes the explaining - i'm so over it. I did purchase false lashes/temporary eyebrows which did make me feel good during the time they were on but still not a every day thing for me but once again - it's only my 1st year i have a long journey.
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Permalink Reply by TurboK on
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I have been suffering with this hideous AU for almost 20 years. I am so tired of it. I have lost a lot due to the chosen ignorance of others. I was living in NC when it hit. I lost my job and my home because of it. I lost friends, and family because I refused to admit that I did it to myself. I was kicked out of the church I was attending because I had said that God gave me this disease, which he did, and I would not admit that I prayed to God and begged him to give it to me.
I still cannot look at myself in the mirror without something on my head. Just the thought of seeing my bare skull still gives me a gag reflex.I will never get used to this.
I had been taking LDN and was having decent success, but now my body has built up a tolerance to it, and all the progress I had made disappeared almost overnight. The same thing happened when I was on the Cortisone shots and cream when it was AA.
I honestly don't know how others do it. No matter what I try to get rid of this disease, nothing works.There have been times I have wanted to end it, because I cannot live like this. This disease has killed my soul.
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