I saw a post on a favorite RA site, a Canadian news segment about a body suit that simulates the physical restrictions of having Rheumatoid Arthritis. This innovative educational tool is designed by a German doctor.
The suit, a fantastic concept that will raise awareness for an often misunderstood ailment, has a neck cuff to mimic stiffness, what appears to be bungees adding resistance to arm and leg movement, a few wrist braces and a thick mitten rounded out the handicaps. In the short and interesting video, a reporter dons the suit and looks appropriately clunky. She tries a few finer motor movements and remarks on the awkwardness of the effort. The newscaster also notes that the pain experience of RA is absent.
This awesome three minute shout out had an additional 3800 shares on Facebook–but what really blew me away was the comment section!
So many people were enthusiastic to finally have a way to convey what they were going through. It was clear that not being understood, not being seen, is huge for people with a fairly invisible condition.
Many people also noted rather sharply that without the pain element represented in the suit it was rather a hollow simulation. Also absent were the fatigue and effects of medications, as one commenter noted, which only compound the effects of the disease.
What took me by surprise was how some thought that the pain and discomfort they experienced needed to be actually felt by other people in order to gain understanding of the legitimacy of our suffering, and the ferocity with which we express it. Much anger was also directed at government agencies and doctors for the denial of benefits and underestimating the physical and mental anguish. There was bitterness at the betrayal by the people we turn to for help.
The comments made clear to me that our support system fails many people and the scope of the tragedy.
Sure I went nine years un-diagnosed due to what seems to be a very shaky diagnostic set of tools. Sure I’ve been uninsured and had to weather the storm out-of-pocket. Sure I’ve lost work and friends and opportunities in life because of the way chronic illness goes.
But never in my wildest dreams would I have cause to wish my level of pain, or the even more extreme pain that many of you have, on another sentient being so they would know how I felt. There are realms of pain for which we have very inadequate language. Having been there over and over again, I can only wish that experience gone from the world.
Yes, it would be great if people in chronic pain got the empathy and recognition and support they need, but it is unlikely to occur through the agency of a clunky sim-suit.
What it is going to take is for all of us to become fierce and compassionate advocates for our cause. It is going to require each of us being an implacable stand for the care we need and deserve, and being powerful, clear communicators around what is going on with us and what our needs are. We are going to have to shake the shame that goes with the pain, and demand recognition for our issues.
Perhaps that means standing our ground with our doctors and pain managers and respectfully demanding the care we are paying for. Perhaps it means no longer saying yes to things when the body wants you to say no. Perhaps it means taking an extra moment with someone unfeeling or misunderstanding to gently talk them through how life is different for you. If we want understanding from others around a disease that is even baffling to those who have it, we are going to have to go the extra mile in helping them get there. How can we possibly expect the “normals” to even begin to comprehend what we have gone through and have experienced? I can barely understand how people live ‘normal’ lives any more, even less comprehends their invisible struggles, how are they supposed to relate to my absolutely foreign physical circumstances?
We are starting to gather tools like the “Spoon Parable” and this sim-suit and blogs and websites, but our openness and generosity will make the biggest difference, not inflicting pain on others.
It’s high time too, that we realized that we are not only asking for recognition and fair treatment, but that we have something to give. It is not for nothing that almost every shaman in traditional societies had been through or lived with a physical and/or mental crisis. There is magic in that place. Rough magic, to be sure, but magic all the same. But that is a subject for another time…
Keep dancing, friends. Keep dancing as best you can.