Wednesday 29 February 2012

Rare Disease Day

It's the 5th international Rare Disease Day today. This year's theme is Solidarity.

I don't have anything particularly groundbreaking to say, but I'd like to write a bit about what it feels like to have a rare disease and why solidarity has been so important to me in my bendy journey.

Please also read BendyGirl's post on it here.

I'd like to start by saying that I am one of the lucky ones.

My condition is relatively common - I'm not one of seven people in the world with it, it's not a never-before-seen syndrome without a name, about half of doctors I mention it to show at least a brief flicker of recognition, there are national support groups for the different aspects of my condition, there are specialists who dedicate a large portion of their working life to the management of bendies. And, diagnoses are increasingly common as awareness increases - it's certainly more common than it was thought 10 years ago, although it's still rare. I have two friends with the same condition that I knew before I was diagnosed and many more since.

I am also lucky because my condition is sort-of not life-limiting. 'Sort-of' because it is sometimes. Other subtypes have a worse prognosis, indeed my subtype is commonly said not to be life-limiting at all, but you don't have to spend long in the online EDS community to know better.

For me (and everyone's experience will of course be different) having a rare disease means being disbelieved, means frustration, isolation, exhaustion and endless reams of paperwork. It means days when all the rubbish surrounding EDS is almost worse than the symptoms themselves. It means sharing my personal medical details with every medic who asks in the hope that they'll recognise EDS in someone else. It means constantly finding that bits and bobs of your life are 'not normal' "what do you mean you can't scratch the whole of your own back?". It means setting firm boundaries - with friends and family, with healthcare professionals, with work, with myself. It means constant self-advocacy.

It also means community - other bendies, other folk living with rare conditions, other disabled people. Other people who can say that most powerful phrase "me too". It means being able to draw on collective wisdom and to share tips in turn. It means finding out which friends will come and sit in front of the TV with me while I slur at them incoherently, or to scrape me of the floor if I fall and Beanie's out, or remember when I have important appointments, or celebrate the small acheivements, or advocate for me when I just can't anymore, or offer a shove without being asked and then take off at a run cackling maniacally, or remind me that it is enough simply to be me.

It means identifying as disabled and solidarity with other disabled people in the face of discrimination and cuts to benefits and services or lack of provision in the first place. It means recognising the intersection of non-privileged identities and solidarity with other people who face discrimation, violence and oppression because of their race, gender, sex, sexuality, class, or other factors.

It means feeling really, really alone and then realising that you aren't so alone after all.

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 ;)