I recently heard about an idea launched by Loughborough University's Ergonomics and Safety Research Institute (ESRI). With the support of health care professionals and patient case studies, researchers developed an "arthritis suit" aimed at fostering empathy for arthritis sufferers. The video below features Amalie, a 14 year old girl with juvenile idiopathic arthritis (JIA) whose movements are severely restricted by pain and stiffness. This specialized suit was brought into her classroom so that her classmates could experience the challenges Amalie faces every day.
I found one of Amalie's anecdotes to be especially poignant. At first, her classmate decided that the suit "wasn't so bad" until he was asked to consider what his chosen sport (gymnastics) would be like while wearing it. He decided it would be impossible, which was precisely the intended message. Overall, I think this suit is a good idea, but I do question how realistic its portrayal is. After all, pain is the main challenge for most people living with arthritis. No...I'm not saying the suit should simulate pain (that would probably be considered cruel and unusual punishment), but I do think that pain needs to be a central element in the discussion.
Click here to read another article explaining how this suit can simulate living with other forms of arthritis, including Osteoarthritis. Sheena Turner, a 62-year-old former nurse has had severe and widespread pain associated with osteoarthritis for 22 years. Because of the pain, she was forced to quit work and was met with a lack of empathy from her fellow medical professionals. There was a succession of comments including: "For goodness sake, just take some paracetamol", "Most people your age have aches and pain", and "It's just your age". Thus, Sheena understand the importance of this suit. She explains, "I think this suit is a wonderful idea if it gives doctors and nurses a chance to try it."
When my friends and family want to know what arthritis feels like, I've found it most helpful to compare my pain to "consistently having the flu." It's as if a light bulb goes off in their heads, followed by a rapid stream of emotions - sympathy, horror, confusion, disbelief. There's usually some follow-up question, such as "You mean you ALWAYS feel that way?" After all, how could someone who looks healthy be in that kind of pain? There are many things I can't do when I'm at my worst and each task really does take more energy than it would without pain. That's the beauty of this suit. Instead of just imagining the discomfort, it provides a unique window into life with arthritis.
What do YOU think about the arthritis suit?
Love,
Maya
Posts
This is cool. I wish they made a chronic migraine hat. :)
ReplyDeleteI think that it could be an interesting tool. I agree that having pain as a part of the suit might be somewhat unethical, but if someone is getting into the suit with the idea that this is what those of us with RA go through every day, it needs to enter the conversation at the very least.
ReplyDeleteI'd like Abbott to bring one of the suits over here so that Americans can understand this a little better as well. It would be interesting to see how friends and family would then change their actions in regards to our pain and experiences.
hmmm, that is very interesting. i think it would at least give people *some* idea of what we deal with.
ReplyDelete