I haven’t blogged since January, so first an update. I did get over that bout of sick on Sick but had about a month of being stuck upstairs because my legs weren’t obeying my brain. This seemed to be fairly specific to my legs rather than my general health, I’m doing relatively okay cognitively. A neurology follow up appointment is in the offing.
Much more positively, I have “returned to work” after 5 years! This returning doesn’t actually involve going anywhere, I can work in bed if needs be. It’s a very part time contract on a new chronic illness research project with Catherine Hale and the Centre for Welfare Reform. You will hear much more about this soon, including how you can get involved.
To do with starting this work, my “rest” mind wanderings have been frequently landing on thoughts about chronic illness identity. I’m particularly curious about how far the ripples from chronic illness affect seemingly unrelated aspects of our lives.
I was listening to a new Brexit theory about Somewheres and Anywheres by David Goodhart. When I heard this particular description of Somewheres I thought it fitted me more than you’d expect (apart from political views such as Brexit, so the theory might be wrong!). Somewheres’ identity is rooted in a place, whereas Anywheres move around and don’t find identity in their local community. On the Political Compass I’m Left Libertarian and I’m university educated, from my background and people I know I should be a clear Anywhere.
Then he said that Anywheres are people who form their sense of identity around what they do professionally and what they’ve achieved. Somewheres have identities which are more ascribed to them (such as considering where they happened to be born as an important part of their identity).
I thought this was interesting in terms of being a Spoonie/ having chronic illness. If you feel unable to achieve identities like the Anywheres do, it makes sense that your identification with place becomes more pronounced. For those of us who spend large amounts of time housebound, we only exist in a very specific place. Having supportive neighbours is important to me both emotionally and practically. I would lose something tangible if I had to move. I also haven’t moved for work because I haven’t been well enough (my neurology appointment is in the hospital I was born in).
Probably if the reason you are a Somewhere is Spoonie related it wouldn’t affect Brexit views because that would be related to a sense of threat about freedom of movement and low wages (whereas Spoonie barriers to employment or quality of life are quite different).
On the other hand, we exist more in the global community online. We may be physically extremely rooted, but form meaningful relationships in cyberspace, more than is typical for healthies.
I’ve been experimenting with modern pinup style. This is definitely a fashion niche and one I’ve picked up online. For a long time I’ve had a sense that I would find my sense of style by the time I’m middle aged. Before ME I was a bit too shy to experiment with looks. This actually means I have fewer embarrassing pictures, but I also feel regret. For the last 19 years with ME, money or energy has been too tight for this to be a priority. Now we’re more comfortably off, for the first time I’m buying clothes for a specific overall look, rather than something cheap to replace something that has worn out.
In this instance chronic illness gives me some space to experiment. I’m still quite self conscious as a person, so I would be cautious about suddenly reinventing myself if I was going out to work. I’ve been following people’s pins on Pinterest, working out Instagram (@jly_vintage_glamour) and reading blogs about it. This brings me to my next observation about identity ripples:
When I’ve been reading modern pinup blogs a few of them mention they have ME. I haven’t read that many blogs so this is surprising. Under 1% of the population have ME and I would guess something similar wear modern pinup clothes. Is there a connection?
Jessica Out of the Closet appears to have a younger, prettier version of my life (like me ME/CFS, POTS, small dog, married a woman in a Quaker Meeting House in Bristol) and I’m currently enthusiastically watching her videos and exclaiming “me too!”. She explains it:
“The way we look isn’t just important in terms of our own identity, it also impacts on how others see us. I continued to curl my hair whilst I was living in hospital- even when I barely had energy to read. Or eat.
It was not only a refusal to give up on who I am (technically a girl with straight hair but that’s never felt very ‘me’!) but a realisation that taking care of one’s outside also affects the way people treat you. Although before becoming ill I liked vintage fashion and bright colours, they took on a special meaning for me afterwards. I didn’t have to be the girl people stared at when she walked in because she was shuffling or had to be helped. Instead I could be the girl in the beautiful dress with a fancy headband- so they didn’t even notice those other things!
When you’re in a wheelchair, or walking with a stick or looking slightly like a fool because you can’t hear what on earth’s going on and all you have left is the blank smile- people are going to look at you anyway. You might as well give them something to look at. Something that is your choice.”
I think she’s onto something about the sense of control. If I wear a Viva Frida skirt with a 50s petticoat and bright red lipstick I know you will comment on this when you see me, rather than asking straight away about my health or saying “but you don’t look ill” (when the person in my pre-makeup mirror does look ill). It isn’t necessarily even about me feeling that I do look good. It is something for them to look at, controlling their gaze. Yesterday I did this with new people. For about an hour I passed as healthy. Then I felt faint sitting up, had to lie down and my partner had to explain that I was ill. It was good for that time though to actively construct my identity rather than having it ascribed to me.
Are you feeling chronically fabulous?
if you liked this post you might like:
The one where I attempt DIY makeup (for the record I now buy makeup!)