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?
15 comments:
my favorite line: "invisible experience a visual image". so excited to read about your work. i love your topic (and you!).
Hi,
I wrote a post about having my readers from How to Cope with Pain give you some feedback too.
I really like your idea as a way to share what the pain experience is like. It's a great way to open up dialogue.
My suggestions:
1. People with pain should only use this occasionally, or for a few days as someone else gets a sense of their experience. Otherwise it would be too much of a focus on their pain, always reminding them of the experience. (What's my pain level now? how about now? and now?)
2. The jagged pain design would be a negative reminder to the patient. How about color or numbers?
I agree with How to Cope's suggestions.
How would the patient indicate the level of pain? - What I'm getting at is... could the level of pain be accidentally pressed/indicated? (I hope that makes sense)
Overall, I think this is a very interesting idea, and I think it would open up dialogue between patients and at least some of their family/friends.
Sufferer's might not be able to wear the bracelet.
Might remind them how much constant pain there in
24/7 all the time.
Size might be to small/large. Might have to have diff-
erent wrist sizes for all.
Pattern would remind sufferer's skin has "crack" look appearance already to it. So might not want to wear it.
Usuability for product,not sure. All doctor's offices,
pain clinics,hospitals already have pain scale that they
ask you to rate your pain.
Public Awareness,I personally think that has been done by RSDS Organization and some doctors that
are in this business that are experienced,trained and understand this very complex disease called
Chronic Pain,Reflex Sympathetic Dystrophy,Complex Regional Pain Syndrome. These
doctors that deal with these problems/situations with their patients are to be commended!
On the other hand I also think that more could be done for incoming doctors to be taught more about
Chronic Pain,RSD,CRPS. It is a true disease,not just
something you make up in your head to get attention.
I,myself have Chronic Pain,RSD,CRPS since 1994. I
am fortunately I have found a great doctor at a pain
clinic I go to,which they help me a great deal. It's
not easy,but I take one day at a time with God's help,try to do my best,try to work a part time job.
KMO
My only comment has been expressed by others...namely that the cracked design might cause me (the sufferer) to look down on an already terrible day and think "Awesome, I'm fractured by my pain." It would be yet another reminder of how my life and my family's lives have been shattered by my constant pain.
What about some sort of reverse psychology (in a sense) - the bigger the rainbow or the sun, the more prayer/help/positive thoughts the person needs? IDK...something that might bring a smile to the sufferer instead of a reminder of an-already fractured life. Perhaps a :-P for the worst day?
Anyway, I love the idea and commend you for your work to bring notice to something that impacts so many lives, both the sufferers and their families and friends. Thank you!
I actually like the cracked design, but I think it should be on the empathizers bracelet only, for reasons stated in other comments... The person in pain might be better served by a more positive symbol.
I however, as a person living with intractable pain, think that mindfulness of your pain is not NECESSARILY a bad thing. No we shouldn't focus on our pain to the exclusion of all else, , but it is important for us, IMHO, to be aware of changes in our pain, and to acknowledge not only our bad days, but also our " good" days. Hence the success of pain diaries.
For me, mindfulness of my pain actually allows me better control of it. That doesn't equate to thinking of it constantly, rather awareness and acceptance of it allows me to feel it and then move on.
What I think is more important than the bracelet for the person with pain, is the communication with caregivers, family, and partners. It is hard for the non-sufferer to
understand our pain, and any tool that helps is a positive.
I applaud you for trying to create awareness for something that is so often invisible to the eye, and for thinking of a way for us to communicate, when frequently verbalization of our pain is construed as whining and complaining.
The vast majority of us do not want to throw a pity party, we just want to be understood and acknowledged.
I agree with the others' comments on color vs. cracked designs. I think you should the cracked designs at least on the 'sufferer's' band.
Truly, my first thought was this - I don't have $ to be spending on a device. My $ is always going to dr.s visits, meds, etc. My partner is caring, but not the most....outspoken, and I think that it might be of more use to those partners who are already trying to talk about the pain but having difficulty connecting or understanding each other.
Hello! I think this is a great idea and agree with most comments. As Ryan said, why not use «smileys» for the scale of pain? On a bad day, I wouldn't mind a :-P to stare at me ;-)
Thanks to « How to cope with pain» Blog to have shared your project with us « HowToCoperS ».
I too like the smiley face idea. I love the entire idea. I really like the fact that I will get more opportunities to educate people about chronic pain. In my conversations I can share hope in the management of chronic pain. This could really be used to help other people who suffer. We are all in this together.
Thank you So much for all your great comments and thoughtful feedback. I will try my best to incorporate your responses into the final design. I've already made some small adjustments - if you would like to review these as well please check out my latest post.
I think an abstract design would be the best option, one that everyone can wear. If you go with smileys, rainbows, the sun, etc, there are a lot of people who are going to say "great idea, but I would NEVER wear that!" Abstract seems the best solution to me. I'd be willing to draw up some ideas, if you'd want?
After a conversation with my Mom, I have to elaborate on the design ideas: If you're walking around with a bracelet that's meant to show people (friends, doctors, etc.) how much pain you're in, being "5 smiley faces worth of miserable" is going to confuse some people and possibly make doctors take you less seriously (and people with chronic pain often have enough trouble trying to get doctors to take us seriously). If you're trying to get a friend or loved one to be more conscious of how you're feeling (which is the best idea EVER, and also kind of acts as a warning system - they know by looking at their wrist not to walk into the room and flip the light switch, or not to talk loudly, etc), having them look at smiley faces is not the best representation of pain. When someone doesn't understand something as invasive and massive as chronic pain, a cheery symbol could give the wrong perception. Even if their bracelet shows cracks and yours show smileys, they're going to look at yours and thing "is this a joke? She must not be that miserable if she's wearing 5 smiley faces."
For me, I'd like to use the system and companion bracelet on a close friend, who has a sort of mental communication disability. He just doesn’t communicate in the same way as most people do, and has more trouble understanding my pain than many of my friends. In this kind of situation, even if the companion bracelet had clearly marked “No Pain / Minor Pain / Lots of Pain / Horrible Pain” options, he would likely be confused when he saw my bracelet and it had smileys or rainbows or anything cheerful on it. He would look at his bracelet and then look at mine and just NOT GET IT. This is where the abstract design comes in: It doesn’t necessarily represent anything, it doesn’t mean your broken but it also doesn’t try to cheer you up. It just -is- and merely represents a 1-2-3-4-5 level of pain system, which even children could understand.
Regarding How to Cope's suggestions... I don't feel like it would be a "focus on my pain". The pain itself is the focus, and it's not like the status changes every few minutes, or for some like me even ever few hours. It wouldn't take much thought or concentration at all, since it would be so easy to change by just touching a small button and you're done. I can do that in mere moments, whereas so many people's first question at the site of me (or as soon as I say hi on the phone, etc) is "how are you today?" And yes, it's because they care, but that makes me have to stop and tell them how I are, and then maybe they want details and you have to focus on it, or even do the possibly-offensive chore of telling them not to ask, which makes them feel bad and also keeps them from possibly getting important information about how carefully they should interact with me. It puts up a communication barrier between you. If they can just look at my wrist and *know* what's going on, it would be worth the momentary thought of "what number button should I use?". That is something I would use every day with everyone I know!!!
That would be such a freeing and helpful event, taking down that wall. And it doesn’t have to be just for the companion, which is why I definitely want my bracelet to show what level I'm at. That way my friends and family can also see what my pain level is. It doesn’t have to be restricted to the companion bracelet if everyone can look at my wrist and see what’s going on.
I believe the companion bracelet system is the best use of this idea, enabling a person to really get a better understanding of what you’re going through…but maybe for those who don’t have a lot of money, the bracelets could be sold separately. That way if both bracelets have displays, you can just get the 1st bracelet for yourself, and then wear it when you’re with friends and family, and they can check how you feel by looking at your wrist. It’s like a bit of extra information for them and will allow them to be more considerate of how you’re feeling…even if you can’t get the second bracelet.
LOVE, love love the idea. I want one!!!
I hate to be obtuse but I don;t get it. I love the fact that you are wanting to help with bridging the communication lapse between those in chronic pain (trigeminal neuralgia for over 30 years)and
'others'. I was hoping when I saw it that it was more a physical thing.
I for one would not want to wear a bracelet or anything that was a sign of my pain, to myself or someone else.
Although I saw 'visual' my thoughts went immediately to tactile; that the band could be tightened or loosned for the 'other' to feel where the pained person was in their pain level, for instance to wear it somewhat tight to give the reminder of what it feels like to have this discomfort (for them, pain for the CP patient).
I am not sure in my mind if a visual representation would be sfficient. Seeing maybe the 3 rep everyday makes both innured to what '3' looks like.
It is wonderful that you conceived of this. I look forward to seeing the growth of it.
Carol
http://apainedlife.blogspot.com/
(author A PAINED LIFE, a chronic pain journey)
I just wanted to say I LOVE the idea! I like the cracked design - but I have a sense of humor about being a little "broken" - and I think might break the ice with others. I have a difficult time with my friends and family understanding and getting it and think this would be awesome and really helpful. Let me know if I can help, etc.
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