#431 – How Does It Feel? – Part 2

It's often true that you can't fully know what something is like unless you have lived it yourself. Sure, you can empathize, you can imagine, but you don't, won't and can't really know unless you've walked the day in someone else's shoes and on someone else's misshapen feet. And you can't really do that nor would I want you to do that.

So, how do you explain what it is like to live with a chronic disease such as rheumatoid arthritis? By using an analogy.

The one I've come up with is the acute pain of a toothache. It nags at you, grabs your attention and distracts you until you make your way to the dentist for that relief...until you get the bill, but that's another type of pain, altogether!

Anyway, imagine that toothache, going on and on, day after day, grinding away at you, distracting you from what you hold dear.

That is what rheumatoid arthritis is like when the disease is active and uncontrolled. Unlike going to the dentist, where you get immediate relief, often the fire of a flare-up can take time - months in some cases - to extinguish.

Deepening the Understanding

There's a post on RA Cellist's blog that provides a link to a clip where a rheumatologist dons a simulation suit called a "Physical Function" suit. He wanted to better understand what his patients go through when their movements are impacted by a chronic and debilitating condition such as rheumatoid arthritis. The suit mimics the restricted mobility of RA but, as the interviewer pointed out, "No simulation can fully replicate the pain that people with rheumatoid arthritis suffer."

Wouldn't it be wonderful if more people had access to the Physical Function suit? People who work directly with those of us with rheumatological conditions - doctors, physiotherapists, occupational therapists, nurses, massage therapists, etc. I can just imagine how different our world would look if policy makers, designers and engineers were able to spend some time working in one of those suits. Products might be more user-friendly and policies more inclusive and reflective of our needs.

I'd like to acknowledge that things have come a long way since I was first diagnosed, thirty-five years ago. However, I think that journey has not yet been completed.

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