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

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I wish I had been told I would to find out who I am without hair and had some help with this, it would have ment I didn't feel so down . My younger self should have fun with her hair and most def grow it! Alopcia has ment I have found out a little more about what is inportant. I can have fun without worring so much what my hair looks like.
Advice to younger self:
- enjoy your hair, grow a mullet do whatever you want with it while you can

Positives:
- absolutely none

Life lessons:
- the world is even shallower than you thought, appearance is everything

Hi. 'My' alopecia is possibly different, in that I have FFA, which entails a very gradual loss of hair in a band, around the hairline and over the ears. It took me a very long time to realise my hair was disappearing, so no sudden patches to contend with, but the horrible anxiety of worrying 'is it going?', 'how fast is it going?', WHY is it going?'.

And when I went to my GP at the beginning, when my eyebrows went, I was told there was nothing that could be done and it was my age. Thanks. (I was in my late 50s.)

So ... what do I wish I'd been told: emphatically that it was not age that was causing the problem, but FFA. It might not have made any difference to where I am now, but at least I would have had the choice. And I wouldn't have kept it all hidden for so very long. I used to lie in bed at night, fiddling with my hair, desperately hoping I was imagining it going. And I didn't tell anyone, even my nearest and dearest, until I felt so overwhelmed, I had to.

Which leads onto the third point (back to point 2 in a minute!) ... losing your hair is nothing to be ashamed about. I have an auto-immune condition that has created the problem, and there is b****r all I can do about that. Telling people took a huge leap for me, but brought back a measure of control. Then doing something about it (Intralace system) multiplied that exponentially. So, younger self, be strong and don't let ill-informed doctors knock your confidence so much that you do nothing about what is happening and carry the emotional burden all on your own.

Also, younger self, trust in people. Everyone close to me has been brilliant about it all - no judgement at all, and that includes the young children in our family. Again, nothing to be ashamed of, and they care about you.

Positives - ???????????????  I honestly don't think there are any. I may accept it, and I am happy with my 'new' hair, but would I want my own back? Of course I would!

Denise

Hi Denise:

Found your post to be so informative. I have recently been diagnosed with FFA. My dermatologist is very supportive but I feel she is not very experienced in treating FFA. Would love to hear from you and others with FFA about your journey, what has worked for you and what how you came to your level of acceptance.

You are an inspiration!

Tina

1. I wish I would have been told that it was all going to be okay, people will accept you for who you are and you will figure out how to live your life one step at a time.

2. Some positives are the usual, no shaving, no bed head, choose whatever kind of hair I wanna have. The more important ones though are how humbled it was made me and how much closer I have become to my close friends and family. 

3. Don't be angry with people for having what you cannot have, it isn't their fault. Walk with confidence, you are only as beautiful as you believe you are. Don't sweat the small stuff, there are bigger problems in the world. 

Nice comments Lauren.

Lauren, Forgot about the no-shaving advantage.  It really is nice, as I can be ready for the pool in the summer in just seconds (LOL!)

I wish that my first doctor had warned me that it might all come out.  I'd have been better prepared.

The positives are legion.  I have much better hair now than what I used to grow, I love being able to choose whether I wear hair or not and I look younger because my hair is about 50 years younger than I am!  Plus I found a new career!  What's not to love?  

Life lessons - people love you for WHO you are, not what you look like.  When you put out a positive vibe, that is exactly what you get back in return.

So true, positivity breeds positivity... and even if it doesn't, at least one of us is happy!

1.  I wish I had been told of the dangers of prednisone by the dermatologists before I took it, and developed high eye pressure, cataracts, etc.  I would have never touched that drug!  I wish I had been told that when you stop the drug, you sometimes develop alopecia universalis (which I did).  I also wish that I knew that the hair that I did gain with prednisone would fall out immediately after I stopped the drug.

2.  I love wearing wigs, and there are very few wigs that I cannot wear.  Also, having alopecia universalis, means that the wig sits exactly as it should on my head (unencumbered by a mop of hair).  I learned that I do not have a large, badly shaped head.  I actually have a beautifully shaped head of average size.  I only thought it was large because, all my life, I had so much and so very thick hair.

3.  I can't say that I learned any lessons from this disorder.  What was I suppose to learn, other than losing all your hair sucks!

Im gonna be short..

  • 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? - you are looking hot without hair.. more self-confidence
  • What are the positives you've found in having alopecia? - more respect for the people who are being bullied
  • What life lessons have you learnt that you wish you could tell your younger self? - dont give a fuck about people opinions

I wish I had been referred for some psychiatric support to prepare me for what lay ahead.  Also advice on the range of wigs and that the real hair variety will never look quite like the synthetics.  (that would have saved me about £1,400)

Positives - I can swim on a regular basis wearing an old wig and not have the fuss of having to dry and style hair.  Simply stick the old wig in a bag and don the good one!  I also can get ready to go out very quickly.I've been told that I look 10 years younger than I am and believe that my synthetic wig takes years off my age but that is reliant on finding a good stylist.

Life lessons - I should have dyed my hair and worn it in every whacky style possible when it existed.

Good luck!

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