The visual campaign: M.E awareness week

M.E Awareness Week @ hayleyeszti

M.E Awareness Week @ hayleyeszti
M.E Awareness Week @ hayleyeszti

M.E awareness week @ hayleyeszti.com



M.E Awareness Week @ hayleyeszti.com































M.E Awareness week @ hayleyeszti

M.E Awareness Week @ hayleyeszti

M.E Awareness Week @ hayleyeszti
M.E Awareness Week @ hayleyeszti






















































M.E Awareness Week @ hayleyeszti


Hair: Jake Gallagher www.jakegallagherhair.co.uk
Photo editing C/O Charlie Denis
Makeup: Tracy Jayne MUA


I am so pleased to finally be able to share with you my visual campaign as part of M.E awareness week. M.E in an illness that leaves a lot of people needing wheelchairs, but they aren't permanently disabled which can leave a lot of sufferers being accused of faking their disability. Not all disabled people are permanent wheelchair users, and not all disabled people necessarily even use wheelchairs. The sooner that misconception is demolished the better.

M.E is also an invisible illness. Only if you are willing to look close enough you can see the signs, but generally speaking it can't be seen, unless you are using mobility aids which would then suggest that something is wrong. Do I look sick in these photos? No, because I have a face full of makeup and my hair done. Sufferers can (as long as they are well enough to get out of bed) hide those black eyes, put foundation on their pale grey skin, put clothes on, and smile as if nothing is wrong. 

What you wouldn't know from looking at these photos is that they left me severely ill and in bed for days on end after, a symptom known as 'post external malaise' where our bodies suffer following activity and over-exertion. Yes we might be able to (once in a blue moon) go out for a while, but what you don't see is the weeks prior to a trip out are normally spent at home resting and preparing just for a few hours of normality, and weeks are spent in pain recovering from that one afternoon too. I think that is why a lot of people underestimate the severity of the illness - because the real extent of it is almost never seen. 

I wanted to do this photo shoot to highlight all of these points visually. Please share this post on your social networks and help me get the point across this awareness week.

M.E is alive inside of me, but the real me inside is just about surviving, she is definitely not living.




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55 comments

  1. Wow, I am speechless Hayley-Eszti! You look beautiful, and the fact you did this for awareness and a good cause is so amazing. Sometimes seeing things helps people to understand more, this should get the attention of many, it deserves too. So fab!
    <3 Tash

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  2. Breathtaking, amazing and inspiring! GREAT campaign! Good luck with it!

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  3. Beautiful photos, evoking the sadness of the gray sea. A nicely done photo shoot which reinforces the loneliness of being young and being ill. We can, however celebrate your own grappling to help others understand and to help those others who suffer as you do. Tis a good thing you do, Hayley-Eszti!
    I will add a text box to my page to advise others of your post.

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  4. Wow, I second what D.G Hudson has said, I like how the photos almost tell a story and the moody colours, I love the one with the rainbow, it shows there is hope and brightness a mist the darkness. Was there a real rainbow there or edited in?

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    1. It was real :) We got caught in the rain (which was horrible!) but we did see a double rainbow which was so pretty!

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  5. I have added the text box, if you'd like to have a look: in the right sidebar, top.
    http://dghudson-rainwriting.blogspot.ca/
    Good luck!

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    1. Extremely kind of you, thank you so much D.G

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  6. What an amazing post. I use a wheelchair only when I need to. My neighbors have shouted abuse at me claiming I fake it. We both know that is not the case. These photos really highlight the disabled element, the invisible element, and the dark element. I guess the grey clouds weren't planned but for me it has worked out incredibly well. and it is an incredible photo shoot. Congratulations to all involved for this!
    Now you get some rest.

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    Replies
    1. It sickens me that this happens! Some people are so closed minded, but this is why I do this sort of thing! Thanks for the support!

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  7. inspirational, beautiful and really creatively done. hope you 're having a good day :) xxx

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  8. Hayley-Eszti, this series pulls me in two opposite directions: 1. Happiness that you can dig deeply and live your life for a few hours. 2. Sadness that you and many others suffer with this disability.

    You are leading the way here in teaching the world about M.E. and the need for recognition and funding for further research. you are quite the human being and I am proud to know you.

    Oh yes, I may have mentioned this before that you and my sister would definitely 'hit it off'....so much in common as far as interests/artistic ability. Maybe one day......

    I will post this to my FB page.

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  10. Wow, wow and wow. Very inspiring, great to see a visual awareness post too, not many spoonies do them!

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  11. Had to delete the other one, got a bit muddled :S
    Hayley-Eszti! This is amazing :D I'll be doing a round up of M.E. awareness week on the blog tomorrow so i will definitely feature this and do a little write up. You look gorgeous too BTW ;) I know how hard it can be to just get dressed, let alone theoutfit changes. I know i don't know you that well but I would just like to say Well Done on behalf of all us Spoonies :) It's a beautiful way to raise awareness x

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  12. Beautiful, just beautiful and an inspired way to raise awareness! This must have really taken out of you. I hope you weren't too poorly as a result.

    Faye
    Freckles-and-all.blogspot.co.uk

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  13. This came up on my news feed, I don't know you but you are inspiring and gorgeous, well done

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  14. I am in awe of you. You rock sister!

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  15. Incredible. All the points you brought up are so true. People tend to think its not there when they can't see it but there are so many thing that can't be seen. You also look so lovely. Thank you for continually speaking out and speaking up. I always look forward to your posts!

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  16. Brilliant !
    Absolutely brilliant.

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  17. Wow, what gorgeous, sad, inspiring, touching photos. I have provided a link to this post at the end of your guest post which will come up tomorrow, 12:30 AM Pacific Time, so you should be able to read it in the morning. These pictures speak volumes and so do your words. This is a great campaign that we should keep up year round, I think. I say we and by that I mean that we in the blogging community could help you spread the word on social media and in our blogs more often than just once a year.

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  18. Hello Hayley~Eszti. I followed you from D.G.s blog. I am blown away by these gorgeous pics, and by your determination that made the photo shoot possible. I am no stranger to disability. My neighbor has M.S. and has a daily struggle to work and live her life. I will be following you and wishing you the best !

    Denise

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  19. Hello Hayley!
    You see my difficulty in writing my post about Laura Hillenbrand's Chronic Fatigue Syndrome on my blog. It is true that she has written two best-selling books but it is has taken her YEARS to do so, and for many of those years, she could not even get out of bed. At the same time, she tries very hard to be as positive as possible and with an illness that many think is something that is IN HER HEAD! I think that must be just the worst thing, to have an illness such as this and have to endure people not believing you or making fun of you (and I am also talking to YOU RIcky Gervais!!! (That was so funny in your post when you said that, I hope he might read this!!)
    You are such a beautiful young woman. I also wish you the best!

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  20. This is a great thing, the photos tell a story, your emotions tell a story. I like how the last photo is a wheelchair, like one day it will be left behind.

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  21. Gorjuss! Your hair look fab nD luv the clothes. I'm a WC user too so no people dint always understand.

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  22. Wow, your inspiring! Well done Hayley a fantastic way to raise awareness! I hope this didn't take it out of you for too long. P.S: you really should be a model you are gorgeous! xxxx

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  23. Wow amazing just amazing great effort and well done ;)

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  24. Gorgeous, H-E! I hope the payback wasn't too harsh. X

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  25. This honestly made me cry.
    I was diagnosed with M.E at age 14 and struggle to this day, but my photography keeps me going. These pictures are beautiful. Love, Nicolette x

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    Replies
    1. Awww! It's tough! But I'm so glad you have found your photography to keep you going :) <3

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  26. This post is absolutely stunning, Hayley! Your pictures and your words are truly beautiful and filled with so much authenticity. Thank you for having the courage to share this so bravely. I'll share it as you requested! :)

    Thinking of you and hoping you are recovering well,
    Rachel

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  27. What beautiful shots! And a great way to raise awareness.

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  28. This is mesmerizing!
    I keep coming back to it!

    www.jennyhelenmyspoonielife.blogspot.co.uk

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  29. wow these photos are stunning. You look so gorgeous and empowering!
    I'm sad that they left you feeling ill for days afterwards. You really wouldn't be able to tell from the pictures. I'm not sure if M.E awareness week is over yet but I'm going to share this post on Twitter anyway!

    xo
    www.thisisfrancescarose.com

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  30. you are such an inspiration and your pictures and words are just beautiful. Stay strong, you wonderful lady xx

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  31. This is a very inspirational and educational post. Thanks for the awareness. I had no idea.

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  32. Dear Hayley-Eszti, thank you so much for your comment. How I wish I could go and give you a big hug! I am sure my blogger friends would love to hear from you when you feel better. Maybe you will make some new friends this year too, like you did last year. Since I haven't read/commented on any blogs for a while now, I made a point of reading and commenting on close to 50 blogs in the past two days. I am not one of those people who can do hundreds of comments in a day, so that's the best for now. I will do more tomorrow, hoping to generate more traffic to your post. I will keep it up for several more days too. My husband is going back to the doctor on Thursday, so I hope to know more about the next step then. Take care, get some rest, you have done such a magnificent job promoting awareness for M.E.

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  33. very very nice!!!

    www.borsadimarypoppins.com

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  34. This is brilliant & the photos are beautiful! Well done for being able to do this, the effort you had to go through is certainly worth it as I think they get the point across. Take care & plenty of rest now xxxx

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  35. You are a beautiful beautiful young woman. I hope you get better soon and let great health nurture your beauty! Thanks for writing the post and let more people know about this. I've just shared it on my facebook page.

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  36. This is an amazing post that so beautifully highlights all of the points that we as sufferers try to get across so often to people who just don't seem to "get" it! Hopefully a visual aid will be enough for them to finally understand that a beautiful face, perfectly styled hair, and stylish clothes don't mean that you aren't sick, just like a wheelchair doesn't mean you are helpless. GREAT job. I can't say enough good things about this!!!

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  37. I was deeply touched and also impressed by the stunning photography and by your courage, as I read this post. I have no experience with M.E. but really appreciate the awareness you are creating by writing about it. I may have read too quickly but am curious about the photographer (same as the photo-editor?) who did such a thrilling job of showing the wide range of beauty in your body and soul. (Guess that sounds a bit dorky but it was the thought that came to me :) I will be continuing to read your blog. It's a keeper!

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  38. So utterly touching. You look so radiant in all of them, but the one third from last is particularly powerful and my favourite :) What a brilliant idea to raise awareness of M.E. I know you're a reader of my blog (I'm always grateful for your thoughtful comments, thank you) so you probably know this but I can relate a lot to your words and tried to write similar recently, especially about the "behind the scenes" bit of resting to make up for having been out and not being able to see that there's anything that makes seemingly simple things a struggle for you. Are you getting these photos published anywhere else? I can't really express properly how important I think this post and how proud I think you should be for putting together such a powerful and beautiful project to raise awareness. With lots of love xxx Beeta (http://fillmylittleworld.blogspot.co.uk)

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  39. This is such a wonderful post, Hayley. I had M.E. for most of my teenage years and as such missed lots of important time doing things that 'normal' teenagers do (whatever that means). M.E. left me feeling frustrated, useless and lonely because people simply couldnt understand what was wrong with me and it was implied by a small few too that I was faking it all (even by a locum doctor once) which in return had a bearing on my self-confidence and self-worth. Campaigns like this can only help to raise awareness of a horribly debilitating illness. I am nearly 30 now and although I consider myself fully recovered, it takes time, patience and support (which it looks like you have). Have faith, take your rest and keep posting. You are such an inspiration.

    Mags xx
    Margaret's Blanket

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  40. Shared on my FB page. Beautiful. Gorgeous. So courageous. Thank you.

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  41. Forgot to include my wordpress blog url.

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  42. This is stunning, and very inspirational. I am so proud of you for doing this to raise awareness.
    Great job!

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  43. This is stunning, and very inspirational. I am so proud of you for doing this to raise awareness.
    Great job!

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  44. Amazing! Very very nicely executed, eye opening, informative and beautiful, keep up the good work - you're on to something big!

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  45. This is so so so so beautiful! <3

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  46. How did I not comment on this? Maybe because there aren't enough words to explain what it does to me.

    /Avy

    http://mymotherfuckedmickjagger.blogspot.com

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  47. These photos are almost as amazing as you! As a fellow (multiple) invisible chronic illness sufferer I can relate to the lack of understanding & awareness there is when it is not blatantly obvious there is something wrong. This is a beautifully written post. Xx

    whentaniatalks.blogspot.co.uk (my beauty, fashion & lifestyle blog)
    taniatalkshealth.blogspot.co.uk (my health blog)

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