January 8, 2011

Call to Action: Pics for Project with Villanova University

UII is working with Villanova University on a groundbreaking project!  Nursing students at the University will be researching what chronic/invisible conditions are present on campus, and doing projects on them and the effects they can have on body image!  This will be presented in combination with an existing program - "Love the Skin You're In", a body-image focused fashion show (held this year on February 7).

At the University's request, UII is coordinating a live panel discussion, which will take place on February 22.  In addition, we have decided to develop a visual display to accompany the fashion show (there will be many displays with body image and health information, as well as the student projects).  This display will then 'travel' the campus as promotion for the panel discussion!  That means at LEAST two full weeks of exposure raising awareness of chronic and invisible illnesses on a campus of nearly 10,000 students, staff, and faculty!

But to make the display a reality, we need YOU!  We are asking people from around the country (and around the globe) to send in your pictures showing the 'hidden' aspects of the conditions you live with, such as:
  • Good health days (put together, well rested, makeup and hair done, etc) versus flare days (blotchy skin, rashes, exhaustion, oily unwashed hair, and so on),
  • Scars, hair loss, patches on skin, or other permanent 'marks' of your condition(s), or
  • Revealing the hidden devices you use (insulin pumps, prosthetics, etc)

See the bottom of this post for a list of ideas, but use your life for inspiration!  The sky's the limit.  Our goal is to show what lies below the surface; what we really look like in the throes of our conditions.  Our battle scars, if you will.  Also, take an artistic license...black and white, close ups, high or low angles...anything that emphasises your subject is great!

General information:
  • The deadline to submit your photos is Sunday, January 30; however, the earlier the better as the pictures will need to go through at least two reviews before being sent off to be printed.  I will let you know if we are able to extend the deadline.
  • Pictures should be submitted via email if possible.  Please contact me if this is a problem and we'll discuss our options.
  • When submitting pictures, please include the name of the condition, issue, or device, and if you want your name to be listed or the photo to be used anonymously (see below).
  • We would like to represent a wide variety of conditions that are chronic and/or "invisible" in nature.  If you are unsure if your subject is appropriate, please ask me and we'll discuss it.  Most conditions will be relevant; see list of examples below.
  • Pictures should show the 'truth', but please be tasteful - use common sense, if you wouldn't want to show your grandmother, don't show it to us.
  • All pictures will be reviewed for appropriateness and space restrictions first by me, then by staff from the University's Office for Health Promotion.  We retain the final decision on which pictures will be included.
  • Please indicate if you wish to have your name listed as a contributor.  If you so desire, we will use your picture anonymously.  No picture will be individually identified with a name, but we will provide a list of contributors who wish to be included somewhere with the display.
  • As this is a Catholic University, please understand you may be included in prayer intentions as a participant in the project (whether by name or anonymously).
  • We will try to let you know if we wish to use the picture again somewhere in the future; however, depending on the logistics of tracking all the photographs, your submission will imply your consent for future use of the image for educational and/or awareness purposes.
  • No information will be shared (other than your name, if you elect to be listed); your email address and any other identifying information will be kept private.
  • I will be posting pictures and perhaps video of the display and event online when available.
  • I will also try to put together a handout or list to go on the school's website of resources and communities students can look into.  If you wish to have a site or community listed, please send me the information so I may review it beforehand.
  • Don't forget to send a "healthy" or "normal" picture as well (if possible), so we can show the contrast between the face we choose to present to the world and the one we see in our own mirror!

Examples of Ideas for Pictures (this is just a list of IDEAS; please feel free to use other ideas):

  • A profile picture (like the one I use - makeup on, hair done, in a formal suit), contrasted against
    •  the bald spot I usually cover (from Localized Scleroderma), or
    • of myself in bed totally wiped out with oily hair (because I'm too exhausted to wash it) and pale, blotchy skin with swollen parotid glands 
  • A person in an outfit which hides an insulin pump, contrasted against
    • them lifting the clothing to reveal the pump and where it enters their body
  • A person at an average weight having fun and laughing, contrasted against
    • protruding ribs, rolls of fat, hair loss, or brittle nails (for someone with an eating disorder)
  • Scars (from surgery, self-injury, or disease progression)
  • Patches on your skin (such as scaly patches, red marks, ruddy patches)
  • Rashes
  • Mouth ulcers, tongue lesions, severely chapped/sore lips
  • Inflamed joints
  • Discolored or misshapen extremities
  • Hives
  • With-versus-without a prosthetic (such as standing on two legs then the same pose with one fake leg missing)
  • Devices which symbolize something about your life with this condition (for example, I might use an array of eye drops for varying levels of dryness or the denture cream I used to hold in a temporary crown on a tooth destroyed by dry mouth), such as:
    • mobility aides
    • joint support devices
    • testing supplies (such as for diabetics)
    • medical paraphernalia (such as syringes)
    • specialized furniture
I have created a special email address for this project (which I may continue using in the future):
Please send all photos, information, and inquiries to uii.JennyP@gmail.com (that's uii [dot] JennyP [at] gmail [dot] com).

COUNTLESS conditions fall in the umbrella of Chronic and /or Invisible Illnesses.  A VERY brief list of conditions follows (this is NOT an exhaustive list by any means):
  • Autoimmune diseases (Sjogren's, RA, MS, Lupus, etc)
  • Diabetes
  • Pain conditions (Fibromyalgia, etc)
  • Chronic Fatigue Syndrome
  • Gastrointestinal diseases (Crohn's, IBS, GERD, etc)
  • Mental health / emotional / behavioral conditions (Autism, Depression, Bi-Polar, Anxiety, Schizophrenia, etc)
  • Cardiopulmonary diseases (heart disease, pulmonary embolisms, Asthma, etc)
  • Cancers
  • Chromosomal disorders
  • Musculoskeletal conditions (Osteoporosis/osteoarthritis, etc)
  • Neurological diseases (Parkinson's, ALS, etc)
  • Severe allergies (Celiac, other specific foods, etc)


  1. Love the project and am so excited to see this come to fruition after our discussions on WEGO Health! Very exciting.

    I will be participating, promoting and be in touch with you. I've already tweeted about it and am working on pics!

  2. Sounds like an excellent project and a great way to raise some much needed awareness about various health issues. I will support and spread the word to my readers..

    Thanks for sharing..

  3. This is amazing, Jenny- I am so proud of you!

  4. I love the idea!!! You are doing so much to help many many people!! This is amazing!

  5. Love the idea! But don't know if I have bad pics to show a contrast.

  6. I am so glad you are doing this! There are millions of us with fibromyalgia syndrome (also called FMS, CFIDS, Chronic Fatigue Syndrome, or ME) but no one knows how bad we feel because we try to hide it and act "normal". I have started scanning photos so I can select the "normal" and "invisible illness revealed" pics. Thank you so much!

  7. Mary (and anyone else with this issue): I suggest carrying around a camera for the next week. As I discovered myself in the past week, it's surprising how often you may find yourself in a "sickie" moment and could capture it. Also, think outside the box - some of my favorite pics so far have been things like a waiting room floor or an array of pill bottles, etc.

    Thank you (and everyone else pitching in on this project) for your interest and support! This is an amazing chance I've been given to give life to an idea born on a WEGO Health discussion board, and I'm privileged to have this chance to bring it to life! But I can't do it without all your submissions...so keep 'em coming!!!

  8. What a wonderful project you are doing Jenny! I'll be glad to contribute my story to this project. The best way to make others aware of the face behind this mask is to speak out about these Invisible Illnesses. If others only knew the "real" me behind the smiles and makeup on the "good" days when I'm able to go out in public. I find those days are few and far between. Yet, I am determined not to let these days steal me of my joy. I am determined to not give up. Making others aware of the real "us" is a wonderful project! From one Jenny to another Jenny.....thank you!!

  9. As someone with MS, I applaud your efforts. Many of us hate photos! But I applaud your efforts!

  10. This is such a great project! Thank you! I started to think that I was alone fighting for my 2 year old!


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