Self-care gets talked a lot alongside chronic illness but it isn’t easy for everybody to practice.
I talk about it a lot in my practice and I have had to teach myself how to do it effectively. Believe me, I know that it is hard to stop and fit it into a busy life, even one with chronic illness. I know meditation is not for everyone, it is not for me. Pedicures don’t go so well when you have chronic pain in your feet. Reading a book in a gorgeous setting is not possible with a busy family and neither is long hot soak in a bath. When was the last time as a Mum you got to go to the bathroom in peace let along soak your pain away in a nice hot tub. So I get the how the fuck do I do that moment when someone starts telling you to practice self-care.
No matter how many times someone tells you self care is not selfish it is an important part of managing your symptoms and improving your wellbeing that little voice inside you still screams, what about this and that, we should do this for such and such, you don’t have time you have to……… We are socialised to care for others and self-care is an indulgent use of time. For others, self-care is a sign that they can’t keep up and it is a sign of weakness. However, a very practical illustration of the importance of putting yourself first and one that most of us can intellectually process when the plane is going down you put your own mask on first then you help others including your children. If you can’t breathe you can’t help others, just as if you don’t take time to care for yourself you can’t do all those ‘should’ things for others in your life.
How to make self-care fit into your life and actually be sustainable, not just a quick fix like a 3pm sugar fix in the office? To make self care something that when the shit hits the fan you know you have the resilience to withstand what may come. Quick fixes like pedicures are fun and I am not saying they are wrong, rather self-care that will build resilience and help you withstand come what may is deeper than that. Hey, it might include a pedicure to take time out and reset but when you are living with chronic illness it is about the long haul so incorporating self-care practices that are more robust than a quick fix is important long term.
1. Shut down unsolicited advice.
Ok, so this may be considered unsolicited and maybe some giving you advice to fix something. I get the irony here. I hope you can see that this is not written in a hope of fixing you or anyone it is about giving another perspective of a popular version of self-care. It is giving you permission to define it for yourself. As someone that has lived with a variety of chronic health issues for longer than I care to say and an academic that has read far more research than my eyes appreciate, I know that when you are sick people want to help fix the problem. Those that love you want to fix you, they want to help and that is lovely, really it is. We are also taught the value in other people’s experiences and therefore advice. However, as with many chronic illnesses, everyone’s story is different and it can be hard for those that are not living with it to understand that having a nap is not going to make your fatigue go away or that you just need to take better care of yourself. So advice from loved ones is not necessarily going to fix anything, if anything it can bring more of those ‘should’ moments which can create disconnection between you and those you care about because you feel guilty because you should be doing something they have suggested or something should be changing for you because you followed their advice.
Don’t get me wrong, advice can be valuable but maybe just maybe you don’t need advice on everything maybe just maybe in your journey with chronic illness you are wanting to be heard, wanting someone to genuinely listen to you and to feel connected with someone through your experience of life with a chronic illness rather than distance, guilt, invisible or any other other emotions that come up when you as an individual feel like you haven’t been heard.
Self-care can be about shutting down unsolicited advice so you don’t feel the ‘shoulds’ and emotions that go with them. Self-care can be about communicating to a loved one that you don’t need them to fix things, you need them to listen and to hear from you. Self-care can be about removing yourself from situations where unsolicited advice is draining your energy or bringing on the negative feelings within yourself. Give yourself permission to ask for what you need. If you need advice ask for it directly and if you don’t make it clear you want to be heard, that you want empathy and not advice, that you don’t need someone to fix everything.
It is ok if you need advice just as it is ok if you need empathy. Being able to voice that will give you back some control and gives you power and we all know that living with a chronic illness both those things can feel far removed from life. So acts of self-care can be about taking back a little of those.
2. Your teenage self was on to something.
Hands up who wrote in a journal as a teen? Me, I had a writing journal through to my mid 20’s, I had a poetry journal in my teens, (yep I just admitted that) and I guess you could say I have kept a sketch journal all my life. As teenagers we reflected on our days, the heartache, the drama, the pain and everything else in between and for many of us growing up meant we stopped that waste of time and just got on with life. Boy did we get that wrong, myself included. It was a fantastic form of reflection, a kick-ass way to process life and without realising it an empowering form of self-care. For those of us that can’t meditate journaling is a great way to process life and reflect on things as we go along on the roller coaster that is dealing with a chronic illness. You can use them to record your symptoms, medications and treatment outcomes but they are also an awesome way to practice self-care by processing your day, emotions, relationships, goals and dreams as well and your successes along the way to those goals and dreams. So not the waste of time grown up you once thought.
If you can meditate on things that happen in life, on challenges or on goals you have. You can use that as a reflective process in your self-care. Meditation has been written about extensively and you can find plenty of information on it. Also, it is not something I am very good at, so not something I am going to write about.
3. Not squishing feelings
Not squishing my feelings. Giving myself space and time to process my feelings. Not judging my feelings and accepting that it is ok to feel them, process them and make room to move forward. Doesn’t sound hard right, actually, it takes a conscious decision to do it. However, the reward for giving yourself space and time to feel your feelings without judging them is positivity, energy conservation and the reduction in negative self-talk, and options for emotional growth.
If you are having a bad day it is ok to have a bad day. Acknowledging those feelings and giving yourself time and space to deal with them, reduces the stress you carry. Minimising stress in your life living with a chronic illness is important. Stress does serve a purpose in our lives and how we perceive and deal with it does influence the impact it has on our physical and mental health. Learning how it and other emotions impact you in your journey with a chronic illness is important and the more you do it the more efficient you will become at it. So don’t ignore them, learn how to work with them and ask for help if you need it.
Lifeline 13 11 14Suicide Call Back Service 1300 659 467
Kids Helpline 1800 55 1800 MensLine Australia 1300 78 99 78
4. Time is energy and energy is valuable
We all lead busy lives and finding time to take care of ourselves can seem impossible. So the best intentions of self-care practice are often derailed due to our ‘busy’. It also requires us to say no to people, activities, meetings etc. Saying no can be hard and some feel guilty when they say no to things in preference for taking care of themselves, they feel selfish. Which brings us back to the oxygen masks on the plane, taking care of you is not selfish, you can’t be there for everyone else if you don’t take care of yourself first. Saying no without guilt is an important part of your self-care.
Your time is valuable and your time equates to the use of energy. You know as well as I do that living with a chronic illness often means that you only have a certain amount of energy and little if any available to spare. So respecting the usage of your time is respecting the use of your energy. You need to do it for your health and it is not unfair for you to expect others to also respect that. Avoiding people, things and activities that drain you are not selfish it is self-care. Putting tools and strategies in place to help you manage or remove those drainers is not selfish it is self-care.
The effective use of your time and energy, the removal or minimisation of drainers allows you to focus on those things that are important to you and to enjoy the fun things in life. Those fun things could be an activity with your child, coffee with friends or sex/intimacy with a partner.
5. Peace, Pleasure, Play
When we grow up we often forget how important things like play and pleasure are for or physical and mental health. When we are sick, acute periods of our disease can shift our focus even further to away from being playful, or activities in which we experience pleasure, all that can bring us a sense of peace. I am not suggesting that when you are in a plain flare that you go silly, however watching and a movie that makes you laugh or playing the music you like so you can have a little dance, even a chair dance can help. Things like that can increase endorphins and reduce the sensation of pain. Even sex or being intimate with a partner, masturbation produces all the good hormones in your body and reduces the sensation of pain. Finding ways to play and to find pleasure can reduce pain levels, even in a flare.
I can hear you saying I am an adult I can’t play, how embarrassing. Being playful is hard when you have that mindset, putting yourself in an embarrassing situation is hard, being vulnerable like that is hard. But it’s necessary for our brains to engage with moments of silliness and imagination, especially in times like these where it can feel like everything is on fire. It helps you see things differently and redirects focus from symptoms, being sick and all the emotions that come along with it. Letting go of the façade of control we try to hold on to is hard, especially when chronic illness frequently leaves us feeling like we have no control.
Play doesn’t have to be climbing trees or being superheroes. You define what play is to you. Play can be singing in the shower. Play can be car dancing/singing, one of my personal favorites. Play can be laughing at a funny movie or video on the internet and when I say laugh I mean laughing without caring what others think, yes even if you snort. Play is about pleasure and you are so very worth that. This is not an exhaustive list so here are a few more for you to explore;
Self-care box, store a few things that you find useful, distracting, playful, pleasurable and fun in one place. Preferably in the place that you like to spend time when you need to take care of eg during a flare.
Forgive yourself and be gentle on yourself when your body doesn’t do as you or others expect.
Acknowledge your accomplishments even the small ones, they are huge!
Focus on what you CAN do not what you can’t.
Find a way to get outside and breathe fresh air.
If the internet or social media stress you out or drains you it is ok not to be available on it 24/7. It is ok to turn off your phone and shut down the computer.
Even if others don’t see it the path of least resistance or the easiest option saves energy when you don’t have much.
Multi-tasking is not the ultimate skill. It is ok to focus on one thing at a time. It is ok to insist on that to conserve your energy.
Find medical and allied health professionals you trust, that listen to you, ones that you can tell that something is not right and that you work well with.
Get enough sleep.
Remember that your body has got you this far, through all the challenges and that is pretty amazing.
Hobbies, find ones that bring you joy and pleasure and don’t be afraid t challenge yourself.
Move your body. A walk, a dance, bodyweight exercises, walk your dog, find something that gets you moving.
Drink water, eat healthily
Invest in you, don’t feel guilty for taking care of you, or spending time, energy or money on self-care.
There is nothing wrong with getting a massage or pedicure as a part of your self-care. Caring for yourself as a whole is about more than that though. The list above is not exhaustive but they give you a place to start. Holistic care is more than treating symptoms, it is about treating you as a whole person. Holistic self-care is more than massages is about managing your energy, setting boundaries, play, pleasure, peace, building and sustaining healthy relationships, building strength and acknowledging vulnerabilities, focusing on what you can do, embracing fierce grace and good food and rest.