One of the last sections of my Future Learn course is around personal strategies for living a good life with an impairment.
“Because disability studies collects a huge range of impairments, each of which are experienced differently in everyday life and have different impairment effects, there is no end to the personal strategies people with impairments use to support a good life.”
That being said, it does suggest some examples; community, the spoon theory as a means of helping people understand and mindfulness.
I started to respond with my own personal strategies but ran out of space so I thought I’d carry on over here and invite your ideas and strategies as well.
Online community is a huge way I cope with things. I blog and use twitter to “meet” other people with my condition which helps me feel understood as well as having people to offer helpful tips such as what bottle opener works best. These friends also understand the impact of society and it can be so helpful to know you aren’t alone in dealing with things such as access issues or abuse. Indeed, it helps me to realise that I am not the problem, if it’s happening to other people then it’s not about me personally. I could rationally reach that conclusion but the individualistic nature of western society can really make things feel personal.
Pacing is one of my really important strategies. If you have chronic pain or fatigue, do look it up. It’s the idea of doing something for slightly less time then breaking then going back to it rather than doing a lot of something all at once and then paying for it.
Humour is essential. Admittedly, my humour tends to be dry, sarcastic and biting but there you go. The first day I had care we got into a bit of a mess getting changed. It, like a lot of my life, is undignified and humour can make it easier to cope. It can still get me down of course, it just means I’m not always down about it.
Without a degree of humour, it’s hard to let someone else wash you intimately. It can become tense and awkward if you let it.
Action for change
This is something mentioned by one of my fellow students. Instead of coming up with personal strategies to navigate a world which isn’t designed for us, we should challenge that society. And I think this is really important and there are lots of ways of doing it, from raising awareness by sharing your experiences to hanging off a bridge in your wheelchair.
It’s not a very fashionable thing but having a bit of a moan from time to time can help. Don’t get stuck there but getting frustrations off your chest can be cathartic. And can help with awareness raising!
This should probably be included with community but there’s something more specific about a group of people who are experiencing the same things as you. With that shared knowledge, you can problem solve, you can suggest ideas which have helped you, you become more aware of shared issues and can come up with ways to address them.
Sometimes, we need a down day. And if that’s watching netflix in bed, do it. I remember a conversation with a friend who has mental health issues where she was describing how helpful it can be to give yourself a day to indulge in things. So long as you have a day or time in mind to force yourself back out of it. My fear of giving in and not getting out of bed has long been that I’d just never get out again. So this ensures that won’t happen (sort of) whilst giving you the crash time you might need.
God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference
– Reinhold Niebuhr
I’m not religious or in AA but the sentiment expressed in the serenity prayer is one that I think is important when it comes to coping with long term illness and disability. There are lots of frustrating things I can’t change – I can’t make myself better for example – and getting stuck in a place where I’m angry about it isn’t helpful (there’s a grieving process around coming to terms with acquired disability which is fine, but it’s not a place that’s nice to get stuck in). It’s taken a long time but I feel I’ve mostly accepted my illness and that’s so much better for my mental health and wellbeing. And then there are things I can (attempt to) change such as my old workplace being inaccessible. And this is a much healthier way to use my frustrations and anger.
Whether it’s a page in my art journal or a bit of work on a canvas, creating things helps me in many ways. It’s a distraction from my pain, it gives me a sense of achievement, it’s a way of expressing myself and probably helps in other ways that I’m not really aware of.
What strategies do you have?