Alopecia World
www.alopeciaworld.com
University project - life lessons and positives of having alopecia
Hello! I'd love some feedback on a few questions related to my university project. I'm entering a live competition with Adobe to create a series of 3 posters / prints considering these points:
- What are the positives you've found in having alopecia?
- What do you wish you'd been told, and how would that advice have affected the course you've taken to the here and now?
- What life lessons have you learnt that you wish you could tell your younger self?
I have 4 weeks to have final designs, and I'd really love to create extra prints for alopecia charities / events to celebrate and spread positivity.
Leanne, x
Replies to This Discussion
-
Permalink Reply by Miss.heatherl on
-
Perfectly said, in my opinion. this is what I would have said as well. I have universalis, and it def has reinforced my ideals and philosophies. It's definitely a challenge but learning and/or reinforcing your confidence is a wonderful skill!
-
-
I have FFA. I have been able to keep it to a minimum (so far) with diet, herbs and self-care but it's constantly on my mind. It drives me crazy every time I get a flare up and I start to analyze what I might have done wrong to bring it on. Here are my thoughts:
* I wish I had been told that there are life style changes that can help (it took me several years to fully understand what FFA is and what I can do to help my body).
* I suppose positives are personal growth, forgiveness (both of others and myself) and learning to grieve and let go.
* I would tell myself to take better care of myself (especially with what I eat and put on my skin). I would also tell myself that stress is a killer - learn to deal with it now. And, I would tell myself that I am powerful and capable and that I can act and react to situations accordingly.
Thanks for asking for our input. It's cathartic pondering these questions. Good luck with your project.
-
-
1. I think I wish someone told me that this infact would be my future. I always thought it would grow back since for so long it did. This would have given me the ability to go without a wig when I was younger and more confident and by now everyone would already know and accept this is me, not with cancer but with Alopecia
2.The positive I have found is it is a wonderful example for my kids and even close friends to not be so vain and that things could always be worth, as I walk all the way from the back of the parking lot..it could be so much worse
3. I would tell myself.. stop stressing this, it is so minor and one day you will have the most amazing family that thinks you are a rock star!
Good luck! ;)
-
-
I found out the bald spot found mid August was AA about a month and a half ago. I wish that my dermatologist would give me more information but I realize this is about self education. How fast is the hair loss, do people see the bald area that has spread, do they notice my sparse bangs? What do I tell my little grandchildren who will want to know what happened to my hair. These are questions I ask my self as I.venture out and learn about support blogs and groups.
So far the only positive is learning I am not alone. I have a very distant cousin in England with Alopecia and I now text her for support.
The lesson I am learning is how anaware people are about Alopecia. I am learning to be more positive and to go with the flow and what really matters is for me to enter this new phase in life with dignity and to develop my own style.
-
Permalink Reply by Pam D. on
-
My hair started falling out when I was 58, so this has not been a life-long struggle for me. I had two remissions, but I am now "celebrating" 2 years of complete hairlessness (I'll bet that isn't even an official word) and 5 years overall.
I don't think anybody could have given me any useful advice; what I have learned here is this condition (I never call it anything else) affects us all in different ways and we all handle how we cope (if we can) differently.
I think that once you have accepted and become comfortable with AA/AU, things become easier. If you can't, you might never be completely happy.
Positives? Besides all the time and money I save not having to deal with my hair? I guess it would be how great my family and friends are. In my experience, people have been supportive and kind. I suppose the experience might be different for someone at my age than someone younger.
Most of my "life lessons" have nothing to do with alopecia and everything to do with 63 years of living. The older you get the more you realize the things you once may have considered important (nice car, big house, good looks) aren't all that important at all when weighed against health, happiness, family, and friends.
-
-
I have been dealing with diffuse alopecia for over two years. Doctors thought it was temporary due to illness but then it just kept falling out. The medicine they wanted me to apply topically had a side effect of baldness. UM.
Positive: Wigs are fun but the good ones are insanely expensive. I need recommendations on a great site. I do hate when people tell me "GREAT WIG". Apparently it isn't a great wig if you felt the need to stat it is. People should not realize that it is a wig. GUH.
Learned: Beauty comes from within and shines outward. My kids informed me that if I lose all my hair that they will still think I am beautiful.
I do wish I had a gazillion dollars to be able to afford awesome wigs. Makes things mega easy to get ready.
-
Permalink Reply by Tina S on
-
Leanne, being relatively newly diagnosed with FFA, I cannot speak to your question about the positive aspects of Alopecia as I have experienced very little hair loss at this point.
As to your question about life lessons... I would recommend building wonderful relationships with friends and family as they are the people who will support you as you come to grips with your diagnosis. Treasure them and reciprocate when they need support as well. Always strive to place more emphasis on inner beauty, both in yourself and others.
Best of luck with your project. You have definitely chosen an interesting topic!
Tina
-
Permalink Reply by LaNae on
-
We each view our lives through a personal lens on perception. As a Mormon and therefore a Christian, my journey with alopecia came with some soul searching. Evolving from a few bald spots to universal was a trek ...well almost universal. I did keep one eyebrow and a few lashes on the oppoosite eye. Cute? Not! But I learned to be grateful for each remaining lash or wisp of hair. For me, having alopecia became a parable of sorts with a grand question: What if my testimony of Christ was as obvious as the hairs on my head? Would I be as concerned and attentive to the small holes of doubt? Could I find joy in what remained? Would I seek counsel and follow guidance given? I read scriptures or inspirational material daily before going to bed. One night having just finished a book on Jesus Christ, I pondered on what to read next. I was prompted to read Matthew chapter 10 in the Bible. I was curious as I read the verses that encouraged sharing what was given in darkness, that God is aware of even his sparrows, and that He is aware of the hairs on our heads. Of all the scriptures, I was led to one that reassured me that God knows me. He knows us. He is aware of our hair and our struggles and loves us still. My alopecia became a visual aid to a much greater truth. And then I blessedly was given hair back, it came in curly. God can give delightful surprises. I still have are still some bald spots, but I rejoice much more in what new hair I have and continue to pay attention to efforts keeping the spots small rather than ignoring that they exist. So rejoice in the good stuff of life. Know that God loves you. And be happy still. And if my hair should fall out again, I have some cute wigs and my testimony!
-
Permalink Reply by Jordyn Napier on
-
This is wonderful Leanne, I look forward to seeing what your posters look like. I am a student at UCSB and I would love to post some of them around campus if you post/publish/share in someway what you create that would be great.
I think it is important for our youth with alopecia to understand that being different is beautiful. I wish my sister knew that when she was younger. There was nothing that hurt more than watching her wake up earlier just to alter her look for school to distract attention from what she saw as her flaws. This never stopped the bullying of course which made school even more unbearable for her and myself. I wish her younger self was able to see past what made her different and I wish she got more involved in the Alopecia community where she could have received more support from others who could empathize with her rather feel bad for her. I wish she explored more with wigs and had fun with her style. She can still do that now but I think if she played with the idea at a younger age, she would have had fun experimenting.
The positives that I have seen in alopecia is strength and beauty. My sister is the most beautiful person I know and she loves makeup now. I feel like this has given her so much confidence in her life. She has grown to be a strong, independent college student. Watching her grow up our whole lives I have witnessed this growth and it is remarkable to see where she came from. It has not been an easy ride but she has made it and anyone else can. She still has a heart of gold and is more personable than introverted as she claims.
I wish my sister understood at the time that "life gave her lemons" which is what she always tells me and says. It makes me smile to see her optimism shine through the dark past of alopecia she was born and grew up in. I think for others with similar feelings should know that with a strong mind and open minded heart, they can still find happiness in their life. That they should not let their alopecia hold them back but instead embrace it. Take part in communities and find hobbies that will help you understand that you are not a victim of alopecia but a human.
-
Permalink Reply by Leanne ☺ on
-
Aw thank you Jordyn that would be lovely! I'll definitely post them when it's completed! :-)
-
Permalink Reply by Baldilocks on
-
In my experience:
Positives: Alopecia is a natural repellent for vain, self esteem crushing men (I used to date jerks so my own innate abilities for recognizing these men were defective); no need to shave; you are inspiration to others (I have come across people who are truly moved by my Alopecia - someone even shaved their own head because of it. I feel good if I can remind others to be grateful, whether it be towards their physical appearance, or mental/emotional and spiritual wellbeing) two years ago, I never thought I would say this but there are quite a bit of positives that have come out of acquiring Alopecia but I am short on time.
Wish I was told and how it would have affected my path: I wish I knew the science behind Alopecia: stress instigates it and that personalization, internalization, self-hatred and low self-esteem are all forms of such stress; pro-inflammatory foods perpetuate it. I would like to think that I would absorb all of this information like a sponge and immediately change my ways and be kind to myself, but I know that I wouldn't. I was stubborn in my self-deprecating and destructive habits.
Life lessons for younger me: above all, love yourself. Do whatever it takes to know what that truly feels like: always have someone you trust to talk to, counteract negative self talk, engage in self care, explore your talents, stay away from poisonous people who take advantage of you, abstain from drugs and alcohol. But since I know younger me will not heed any of this advice: hold on and don't give up; you're in for a rocky road that never seems to end but it honestly does get better. Better than you could ever imagine.
-
-
I could have written every word of your letter. It follows the experiences that I had and have now.
I had biopsies and scalp injections which haven't had any results. My FFA became obvious (looking back at photos ) when I was 67 and just recovered from Ovarian Cancer and I blamed this for the hair loss but it seems inflammation and the immune system are the culprits . I have finally accepted wearing a wig and am real pleased with doing that
I do not have total hair loss and have kept my eye lashes but lost eyebrows.
The health tips given by others sound very good and I will try some better late than never. I have a HUGE birthday coming next March so looking forward to that and a new wig.
Thanks to everyone.
- ‹ Previous
- 1
- 2
- 3
- 4
- Next ›
© 2024 Created by Alopecia World.
Powered by
