Shared Pain - Versions 1 through 5

Based on all of the research and feedback I've received so far, I created a few more versions of the Shared Pain idea for your review.

Version 1 is a repeat of the Cracked Version introduced earlier so I'm not posting it here. Version 2 is focused on intensity and color. The pattern increases in size as pain increases and this band experiments with color. Blue represents less pain while red represents the most pain.


Versions 3 and 4 are based on survey results - how people imagine pain in color and image. As most people said they see pain as a bottomless hole or a burning sun, I created abstract images to represent this. The sufferer can wear a simple color band based on their personal preference. Do you see pain as blue to red or as a gradient from white to gray? In the cases shown, white and blue would equal less pain while black and red would equal the most pain. These versions are an attempt to move away from focusing on pain intensity to how pain feels.




And finally, Version 5 is based on animal metaphors. I asked a few people, "If your pain were an animal, which one would it be?" and several people said "eel" so I created an awareness band (no electronics or communication) inspired by this idea. I think the animal metaphor allows people to focus on how they feel rather than on the amount of pain they experience. Supporters and friends can wear it to raise awareness on how chronic pain feels.


My contact information: If you would like to participate in my research in any way, please contact me directly via email at niknox@gmail.com

Thank you!

How would this really work?

In an attempt to answer this question, I am trying to recruit people to test out a simplified version of the Shared Pain bands described earlier. Volunteers are given two simple bands (no electronics) to test out sending pain updates to a chosen friend or relative using existing technology such as a cell phone or computer. The band would simply act as a reminder (in this case). Please see the photo below for more information. If you would like to participate, please let me know ASAP. Thank you!

Pain in color, word and image

These images are based off a discussion I've been having with the Heroes of Healing online community. I posted the questions - what color is your pain? If you could visualize it at its most intense moment, what would you see? What words or phrases would you use to describe this color experience?

And this is what people said...

Design Research: Do you have chronic pain?

In an attempt to recruit people with chronic pain for my research, I created this sign and posted it at pain clinics throughout the East Bay and San Francisco.


Thank you to all those who responded and participated! Your stories helped me understand how people experience chronic pain and how this affects your everyday life.

In order to understand what your experience is in a visual way, we completed the following exercises:






Again, thank you to all who participated!

My research is ongoing, so if you or any one you know are still interested in sharing your story and experiences with me through the above exercises, please let me know!

Shared Pain Design Idea

This is a set of communication devices I've designed to help strengthen relationships between people who experience chronic pain and those who do not (their friends, family, etc.)

STEP 1:
The kit comes with two bands - one for the person with chronic pain (the sufferer for lack of a better term) and the empathizer (the family member, friend, etc.) First, using the Wong Baker pain scale currently used by doctors and nurses, both people sit down together and create their own pain scale using terms they can both relate to and understand.



STEP 2:
This is how the Sufferer's (person with chronic pain) band works. It comes with six embedded sensors hidden behind fabric. The fabric has a cracked pattern on it - symbolically representing the different stages of pain. The person in pain presses the pattern that best represents their current pain level. The bluetooth device (wireless) sends this information to their friend's band.



STEP 3:
This is the family member's/friend's (empathizer's) band works. When it receives the signal from the other, an image appears that represents their friend's pain level. The band appears either more or less cracked depending on the pain level of their friend.





This is a quick mock-up of what it might look like in size.



Things I am now wondering about:
1: SIZE - is this the best size? It is large enough to be clearly seen and it's large size allows it to be used to increase public awareness through conversations, etc.
2: PATTERN - I chose a cracked pattern in an attempt to give an invisible experience a visual image. Does it have any negative connotations that I am not aware of?
3: USABILITY - What could be explained better? What could be easier to understand or use?

You can heal others...

Human beings have the ability to give healing to one another in ways that technology and modern medicine can never replicate. The simple act of looking at the photograph of a loved one can enable a person to endure more pain than he/she thought possible. The small touch of a mother to her infant can bring a level of comfort and security that can never be made up for later in life. Studies show that the elderly who continue to live in the neighborhoods in which they raised their families far outlive their friends who are removed to special care communities. These are just a few of the examples that demonstrate the power of human care and support for one another. Our actions toward people can reduce pain, prolong and even enhance the quality of life. That said, this special power is often overlooked or ignored in times of crisis. Instead, we focus on the complex systems and medical technology that we have built for ourselves – for our comfort and healing. All too often, though, we are left with more misery, more isolation, and more suffering because we trust science alone to heal.

It is not that technology and scientific developments are evil in and of themselves, but that in our age of realism and pragmatics, we lose sight of the other human aspects that make these advancements even stronger and more effective. This idea is beginning to gain momentum in movements such as the Mind/Body medicine movement currently being explored by doctors and medical professionals. Dr. Ron Anderson, coauthor of “Medical Apartheid – An American Perspective”, says, “I’m afraid the technology, the wonderful drugs, and the power we have now sometimes substitute for the attitude of caring.” Though the Mind/Body medicine movement is focusing more on the doctor/patient relationship, the power of touch, and caring as a way to bring unexpected healing to patients, Dr. Anderson maintains that sometimes the most effective thing he can do is depend on a patient’s community and family.

Mind/Body medicine or a “biopsychosocial and epidemiological model” are both complex ways of explaining a simple phenomenon - people need each other. Why are we waiting for science to affirm what centuries of human history have already proven? Why are we so quick to forget this truth? Ivan Illich, an Austrian philosopher, explains how different cultures instruct their participants to suffer with subprograms that include the appropriate words, drugs, myths and models. In his opinion, “Medicalization deprives any culture of the integration of its program for dealing with pain.” Due to an American tendency to focus on disease and biology, we too have a limited view of suffering that largely neglects the psychological, mental, and emotional experiences of a patient in need of care. It is possible that we inflict unnecessary suffering on others by allowing our relationships to diminish in the face of illness. We watch as our hospitals and doctors pull us away from each other, and we understand the reasoning – the need for sanitation and infection control. In the process, we have misunderstood the power of human connection and the healing that we could give to one another if we only knew how to offer it.

The Empathy Illness Objects

I need your opinions:



Storyline:
A friend (Samantha) is struck with a chronic illness of some sort. They may or may not be bed-ridden but the illness is severe enough to disrupt their daily lives. Samantha's friend, Roberto, is unsure of what to do. As a non-sick person, he is not sure how to relate to Samantha's condition. Therefore, he goes online and orders a set of the "Empathy Illness Objects" for himself and Samantha. The set includes two objects - one for Roberto and one for Samantha. Roberto carries his around with him at all times - it serves as a reminder of Samantha. Samantha puts hers in a highly visible place where she will be able to see it repeatedly throughout the day.

Roberto's object requires his attention and care. It sporadically vibrates, beeps, or lights up to remind him of his friend and to simulate what having a chronic illness could be like. Chronic illness affects one of every five Americans. If we do not die an accidental tragic death, most likely we will experience a chronic illness sometime during our life. When Roberto responds to his object, it sends a signal to Samantha's object - reminding her of her community that cares for her.

This object set addresses three needs:
1 - It reminds Samantha of her friends and those who love her, therefore helping her endure whatever illness she is facing (in some subjective measure).
2 - It allows Roberto to stay connected to his friend and reminds him to think of her.
3 - It allows Roberto to undergo a small symbolic simulation of what a chronic illness could be like. A chronic illness acts up unexpectedly and requires your attention. Your response matters, for your own sense of health as well as for others involved.

I need your opinions:
1 - After reading through this scenario, what are your initial thoughts? Does it make sense? Would you be interested in using it?
2 - If you are Samantha, what kind of object would you prefer to have? Would it be a decorative object such as a photo frame that lights up, a functional object that you use for something else in addition to this? What type of object would be most helpful to you in this situation?
3 - If you are Roberto, what kind of object would you prefer to have? Would it be abstract and conceptual - something you add to the things you already carry around each day? Or would it be more functional - attaching to a beltloop or something so you wouldn't forget it?

Please feel free to comment. The project is an exercise... I value all honest feedback!!!!