Martin's niece recently interviewed me on how my identity has changed since developing CFS. It was a good question, and one I've found interesting to reflect on.
Before I got CFS in 2003, I strongly identified (and was seen) as a successful person, although I wasn't very sure of myself. I also thought of myself as a good critical/analytical thinker and as someone who was somewhat intrepid/bold. I identified as a Christian, an environmentalist, a caring person and a good listener.
All of that was severely challenged when I suddenly became very sick and lost most of the abilities that identity was built on. I felt like a 'thing', rather than a person. A kind friend made me a badge with the words "I am a person": to remind me (and the world) that I was still human. I wore it a lot.
I still struggle with those feelings, especially when I'm tired. I feel like I am nothing and all the many investments in me over the years
have been wasted. I often feel fat, stupid and useless. I feel like I must be a bad person to be suffering so much. Intellectually I know those things aren't true, but they bubble up when I'm vulnerable.
This feeling of being 'nothing' is strongly reinforced by my culture. I so often come across things in (social) media that tell me I am nothing. There's the truism that "if you don't have your health you don't have anything"; and there are statements like "if I can do this anyone can" or "anyone could do this in three days" (attached to things I couldn't do in a million years). These voices tell me that I have nothing and am no one. More personally, it's reinforced by the well-meaning people who tell me how wonderful Martin is and how noble he is to have stuck with me. Unconsciously, they imply I am, primarily, a burden.
Fighting with sense of being 'nothing' is a more positive identity that generally has the upper hand.
Firstly, I have an identity as a member of the body of Christ. When I was in Switzerland, I attended a church that had an over-representation of elderly people. The minister once put together a wall made of duplo blocks, with names of various members of the church written on some of them. He talked about how some blocks support many other blocks in the wall and how others just sat on top of the wall, being supported by others. He pointed out that all of the blocks are part of the wall, regardless of their role. He said that, similarly, we are all part of the church - even those members living with Alzheimers who could no longer do anything other than be supported. When I first got sick, before I'd stabilised and been able to find new ways to contribute, I held onto that image. I am part of God's family just by because I am :-)
Over the intervening years my identity has become more nuanced and, as before, is largely built on the abilities I have and the things that I do. I think it would be better if I was able to have an identity less tied to my abilities - as they aren't the core of my existence - but that's how it is. However, whereas before I saw myself as successful but un-self-confident, these days I see myself as strong and resilient (although that can be rocked pretty easily!). I think that comes from knowing I have spent many years facing a difficult situation well :-) I also see myself as a teacher/mentor, a writer, a wife, a thinker/philosopher, a problem solver, a good listener and a creative, caring and organised person. I see myself as a person trying to live faithfully to God's call in a difficult situation.
I'm always conscious, though, that this is not how society sees me. That makes me nervous both when I come into contact with people who knew me in the past and when I meet new people. Most people I knew in the past react with shock at the change in my circumstances, and many are distressed on my behalf at the pitiable shadow they assume my life has become. To counter this, I try extra-hard to exude normality in these situations, which makes them extra-exhausting. New people also sometimes react with pity, although they're at least as likely to act as thought I'm some kind of super-hero because I'm carrying on with living a fairly normal life in most unusual circumstances. I'd so much rather everyone acted like I was just a person like anyone else (or at least, if they did that but also paid attention when I said I was tired and needed them to leave! - not everyone does...)
Thank you, Michaela, for a good and thought-provoking question!
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