I have a lot more to say on this topic, but today I thought I would write a post about how you can best be supportive of not only your chronically ill friend/relative/mail carrier, but also the other people in their lives.
I read something a few years ago about “kvetching circles.” I had forgotten about it until recently. It articulates very simply what I have been trying to explain for years. It is designed for someone with an acute health crisis, but can be applied to pretty much any situation in which one person is centrally affected, like chronic illness.
Here’s how it works:
1. Draw a circle and write in it the name of the person primarily affected. In my case, that’s me.
2. Draw a larger circle around the first circle and in it write the names of the people next most affected. In my case, that’s my parents and sister.
3. Do this concentric circle thing as many times as you have to. I would say circle three is my extended family and closest friends. (I’m fortunate that there are so many people in this circle.) Circle Four is the rest of my friends. In the age of social media, I would say Circle Five is the people I have found care about me and keep up with me via FB but aren’t my friends in real life.
4. You are allowed to vent about my illness to people in your same circle or in the outer circles. So, I can vent to anyone about my illness. My parents and sister can vent to anyone except me. My best friends can vent to anyone except my parents and sister and me. Make sense?
5. There are two rules of kvetching circles: comfort in, dump out. Complain to people in outer circles, comfort those who are in inner-more circles.
When we are discussing my illness, if you ever start to say “this isn’t just about you,” please, I implore you, STOP. There is no coming back from it. I have had to draw hard boundaries as part of my self-care with mast cell disease, and refusing to tolerate shit like that is part of it. It is a hard stop. I don’t need to be reminded that this is hard for you. It is hard for me, too.
Let me know if you have any questions about what is appropriate/inappropriate to say to someone with chronic illness. I’m not easily offended about this stuff, honestly, but I know many people with my disease who run into issues with this a lot.