When I was first diagnosed with lupus, I asked my rheumatologist if she recommended I attend a patient support group. Her answer surprised me; she said ‘no,’ and explained that the experience might frighten me or make me depressed.
Eventually, I did attend a support group, and I saw what she meant; there was an odd sort of competition among a few of the attendees, with one person explaining how “bad” her flare was, and another insisting hers was more serious. I’d never thought of illness being competitive, but there it was!
Fortunately, also at that first support group, I met a woman who is, still today, one of my closest friends and “lupus warriors.” There’s no competition between us, but rather an eagerness to learn from one another (although I would say I’ve learned more from her longer experience than she might have from mine!). So, I am happy I went.
But, also, I have to say that the support group experience was not one that I stayed with. As I lived further on with lupus, I made more personal friends and the need for a group experience waned. Also, I found I was uncomfortable with the competitive nature of some of the patients; I am very competitive in some respects – when it comes to African violet shows, for example, or playing games such as tennis – but not when it comes to health matters. Those are not a “race” against someone else, and I sure don’t need to prove that my illness is “worse” or “better” than another patient’s.
For me, the competition vis-a-vis my disabilities is myself against my illness. How can I take these health challenges, for example, and not allow them to degrade my spirit. That, to me, is the appropriate kind of competitiveness I as a patient need to have.
There will always be people who insist their suffering is “worse” than someone else’s. I try to distance myself from them (while still being compassionate) because their sense of competitiveness tends to sap the energy from where it really needs to be: within myself, against the constraints that lupus oh-so-constantly tries to place upon me.
Peace,
Maureen