Tuesday 21 February 2012

Pacing, Guilt and Self Compassion

This is one of those blog posts that started as a comment but got too long! Before you read this, please head over to Everyday Wishes and read Jo's post on pacing, which is great. Jo writes really interesting posts about living (versus surviving) life with chronic illness so have a click around while you're there =]

I think one thing about pacing folk don't talk about a lot is how spoon sucking guilt is. Pacing can cause guilt for so many reasons. The worst for me is when someone else has to pick up the slack when I don't do something - e.g. I don't do the washing up so Beanie has to do it. I worry a lot about the environmental impact of driving (or being driven) everywhere, of pre-prepared food, of all the packaging my meds come in. I hate hate hate it when people think that I'm lazy.

This guilt has got a lot easier to deal with. If I'm honest the biggest part of this acceptance was external validation. It is a lot easier for me to assert my boundaries with friends/family now 1) they know that I'm sick 2) that diagnosis has given me a framework for understanding my body, which means that I can explain that I need to save spoons, rather than just saying "I'm tired".

That's not to say it's not still hard. It will be a lot easier to pace guilt free next year when Beanie is working and we can afford a cleaner, for example.

Also, part of the privilege of having a visible impairment* is that strangers question me a lot less. If the guy delivering my supermarket shop sees me in my chair he isn't annoyed that I've asked him to bring heavy shopping upstairs to my flat.

External recognition has been incredibly helpful, but I am also learning to respect and assert my needs, and my wants.

It has meant coming to a new understanding of my body. I have lived in boom/bust since certainly my early teens and my way of coping until recently had been to budget 'bust time'** - for example a weekend away would take a couple of weeks to recover from so those two weeks of only getting up for lectures/placement would just be the price. Every couple of years I would have a breakdown, scrape through academically, pick up the pieces and start again. This cycle was making me sick, was ruining my career before it'd even started and was putting enormous pressure on my relationships because I was so unreliable.

It was never going to be sustainable. I am now aware that if I'm ever going to be a doctor I am going to need to be very careful with my energy. I am also aware that medicine is not worth all my energy. If it ever gets to the point where the day-to-day of medicine leaves me with no energy to enjoy my family and friends, no energy for creativity or grappling with big and important ideas, then I have to stop. No matter what anyone says, you can't be a good doctor that way.

(Sadly, I'm also aware that next year a lot of this wil have to go out of the window, but for a few months I can deal with studying and recovering from studying being it if that means I graduate. Although I have to say that I'm dreading it more than a little.)

Pacing teaches me to respect that creative and spiritual expression are access needs and priorities if I am to be healthy. It teaches me to be patient and mindful. It has encouraged me to try and make our home a beautiful, welcoming and peaceful space because I spend a lot of time here (remember Cousin Helen from What Katy Did?).

This self-respect in term has fed and been fed by my political understanding of disablement. Pacing teaches me to respect myself as a person beyond capitalist understandings of productivity and efficiency. My worth is not based on money. I have intrinsic value as a person. As a person I deserve love and respect, and therefore everyone I meet deserves the same.

But because life is never simple...

Sometimes I have 'meta guilt' about feeling guilty for pacing because it doesn't fit with my understanding of disablement. I feel guilty that I can afford to pace in this way, because I have the money to (although I equally recognise that I can't afford not to). Still when pacing starts to work and I feel a bit better, I decide that I'm being overdramatic, ease up, and crash. I let people who don't take my condition seriously make me believe that I'm being lazy and should do more. I have to be mindful not to completely give up any responsibility for housework etc, even if I can only do teeny tiny bits. Sometimes I feel left out or lonely, sometimes I get bored, sometimes I get frustrated. Often I get angry when people say stupid things like "oh, I wish I could take it easy like you do, I just have to be all go, go, go or I get bored".

It's baby steps I think.

Pacing means making lots of little decisions every day and then letting them go. Sometimes you'll make the wrong decision, you'll learn from it and move on. Sometimes you'll be in a position where making the wrong decision in terms of pacing is the right thing to do. Making the decisions gets easier, living with the decisions get easier, resting get easier, downscaling activities gets easier. And for me, the effort is totally worth it.

*I recognise the really complex interaction of relative non/privilege being those with in/visible impairments, this is not me saying that visible impairments always make life easier

**I recognise the pun. As to whether or not it was intentional, I couldn't possibly comment ;)


  1. I wanted to congratulate you on your "What Katy Did" reference - in all these years, I've spoken to many people about chronic illness, and I thought I was the only person who had ever noticed Cousin Helen. Children's literature does have its fair share of people with chronic illness, but it's so often overcome as (more or less) an act of will - like in the Secret Garden and Heidi.

    I haven't read "What Katy Did" since I was a child, but when I got sick as a teenager, the memory of the character gave me a starting place for "I am not now nobody just because I can't get out and do stuff."

    This was a great post, really important stuff. I think the things other people say, innocently or in ignorance or even insecurity (the last person who really upset me about this is disabled but explained how she didn't qualify for benefits because she hadn't "rolled over and given up".) are the hardest thing to take.

  2. Cousin Helen <3

    I wish I had something deep and meaningful to say but really I just wanted to tell you I enjoyed that reference.

  3. When I got my kindle I re-read the books (I downloaded a bunch of books I loved as a child that were free because they're out of copyright. A lot of them stood up well to re-reading and were nicely fatigue reading span friendly. It made me realise how much casual racism I must have read as a child, just as an aside, because I preferred to read older books.)

    I remember finding her an interesting character as a child, but I was really moved by her this year. I think it was that she both acknowledged her pain and fatigue (and seemed to respect / assert her need to rest) but has learned to find love and beauty in that reality, rather than seeking to escape from it. (That sentence took me ages to phrase so you'd better appreciate it...)

    Anyhow. Thanks for commenting. Sorry for Cousin Helen fangirling at you ;)

    It is hard to remember and to remind people that no two bodies are alike, no two bodies with the same condition are alike, no two bodies with on paper similar levels of impairment are alike. Trying to learn the self-compassion to say 'I'm glad that works for you, but it's just not possible for me' is one of those lessons that I don't think I'll ever be done learning.

    Peace x