Everyone who has Rheumatoid Arthritis knows how infamous it is (a.k.a known by name), yet it remains a misunderstood illness. Take Lizzy’s story (Stones in Harmony) for instance in her recent blog post: Color Me Purple: Raising RA Awareness through Visualization. She gives a simple yet graphic definition of the trouble that RA people have in communicating with others about the illness.
I wanted to share something with all of you who have Rheumatoid Arthritis (RA), Lupus, Fibromyalgia or Chronic Pain. One of the most challenging things about RA is trying to describe it to a friend or family member. Sometimes it’s easier to share information with a stranger.
There’s a reason why… .
Who wants to tell your brother or close friend about the daily challenges you face or the debilitating pain and depression associated with your chronic illness? Would it matter anyway – you may think – well knowing that your pain is invisible to the outside world? Or is it? I may have found a really great way of describing RA to the Others. At least it seems to have stopped the people I know in their tracks, making them think about RA for a long hard moment. “Color Me Purple” worked very well on my first guinea pig, my dad. A retired oncologist would surely know about RA, right? Not necessarily. In fact most MD’s seem to know very little about RA. The latest trial was a friend named Paul. Paul seemed so ignorant for the longest time and further aggravated me with comments that would fit perfectly on the list of Twelve Things NOT to Say to Someone with RA:
‘Paul, I think it’s time that you see my pain. I’ve become increasingly frustrated with your comments about my RA and Fibromyalgia. Think of what an MRI image of your body looks like. I have an MRI image in my hands and you are looking at the bones and soft tissues of my body. Now grab a thick purple marker and I’ll show you which joints and other parts of my body are hurting right now. OK, you can circle my my upper neck, shoulders, jaw, elbows, all of the joints in my hands, my hips, knees, oh –and feel free to circle every joint and bone in my feet. There, Paul. You just colored me purple. I’m a walking purple person with RA. That’s what RA is.’
This time, my words helped him see me and Rheumatoid Arthritis in a whole new light. The same thing happened with my dad. It was an ‘A-ha’ moment for him, and a great source of relief for both of us. I hope it helps all of you and your loved ones avoid years of frustration, misunderstanding and loss of relationships. ‘Color Me Purple’ is © under Stones in Harmony. Feel free to share this blog with everyone and anyone who you think could benefit from this description of Rheumatoid Arthritis, Lupus, Fibromyalgia or, the invisible disease.
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Thanks so much Lizzy for your fantastic description. For more great posts, visit Stones in Harmony soon.
Cinda Crawford
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