Finding acceptance with ME/CFS or chronic illness
In the depths of chronic symptoms and on the journey of CFS recovery, whether it’s been 7 months or 7 years, the concept of acceptance can seem impossible. When we’re in suffering, when we feel that any control or decisions about our lives have been taken from us, how or why would we want to accept what’s going on when it seems so unfair, so painful, so unacceptable?
Acceptance can often be taken as giving in, giving up. That if we accept then somehow we’re resigning our whole lives to this reality, that we’re accepting our fate will be this way forever, unchangeable and immoveable. It feels like we’re giving up our control when, in reality, it is the control and the strength of our grip that brings more suffering.
Why is it important to accept
If you’re struggling with accepting, you’re probably all too familiar with the suffering and pain it creates. There’s a parable from Buddhist philosophy about the two arrows (I love this story, I’ve used it before on the blog when I wrote about ways to respond to stress and build resilience).
The story is about dealing with suffering more skillfully. The story goes that, every time we encounter suffering, we’re struck by two arrows. The first arrow may be painful, but it is the second arrow that hurts all the more
The Buddha said,
‘In life, we can’t always control the first arrow. However, the second arrow is our reaction to the first. This second arrow is optional.’
Life happens. A stressful event or circumstance may arise in our lives that brings unavoidable pain. It’s not something we chose or wanted. However, we’re hit more painfully by the second arrow when we respond to that situation by resisting, judging, blaming ourselves or wishing for a different reality. The first arrow we may have no control over but the second arrow, our response to what’s happening, is where we can make a choice in how we respond.
Acceptance is a choice that’s in our hands, however difficult it may seem to grasp. The choice to accept is actually what’s within our control.
Acceptance and the nervous system
The consequences of non-acceptance are also very real for the nervous system, something to take note of when we want to regulate the nervous system to recover from chronic symptoms or chronic fatigue syndrome. When we fight our reality, instead of accepting what is, we send a message to our nervous system that we’re in danger, that where we’re at right now is not ok or safe. The act of fighting will bring our nervous system into a sympathetic fight/flight state, along with emotions like fear, anger or shame that perpetuate that state.
When we learn to allow instead, the energy is very different. There is a softness, a gentleness, a comfort that brings relief. Through allowing, we give ourselves room to breathe and, with that, our nervous system takes a breath with us. Ending the fighting, our nervous system stops perceiving danger and relaxes into a parasympathetic state, the state that allows for healing.
What helped me with acceptance
Buddhist concepts of suffering and non-attachment
Bringing mindfulness to my thoughts
Trust and belief
Changing my focus
Suffering and non-attachment
When I could see my symptoms of a chronic fatigue syndrome relapse weren’t going to suddenly improve in a week, I realised I needed to find a way to live with it for a while, to be ok with it, because the fighting was killing me and draining me. I wasn’t particularly religious, yet I found Buddhist concepts were something that could teach me how to do this through acceptance.\
Whether you follow a religion or resonate with spirituality or not, there is something for us all to learn from the Buddhist philosophy of suffering. In Buddhist terms, we ease our suffering through acceptance and our ability to stay present with what is.
When we’re not accepting, we’re in resistance of some kind. We’re fighting and pushing away, instead of allowing and surrendering. We’re controlling another reality, trying to bend our circumstances into what they’re not. We’re resisting the present moment because what the present moment contains is too painful. We try to run from what’s painful instead of opening ourselves up to accept this as part of the full experience of life and what it means to be human.
Resistance hurts.
The biggest teacher I learned from on this topic is Tara Brach, a huge role model in my life and probably the most compassionate person I know. I found her book, ‘Radical Acceptance,’ hugely helpful as well as her talks on acceptance - below:
With radical acceptance, we start right where we are and meet ourselves where we’re at. We look at what is happening right now, and only right now, and let it be there. In the video above, Tara delivers two important questions that we can ask ourselves in the moment to begin to compassionately accept:
What is happening inside me right now?
Can I be with this?
Start simply. Come into connection with the sensations in your body, feel the weight of your body on the support below you, take some deep breaths and allow yourself to sink down into your body and out of your mind.
What is present for you right now? Is there fear, sadness, pain, anxiety? Can you notice this and simply say out loud, ‘Sadness.’ And then ask yourself, in this moment, “Can I be with this? Can I simply say ‘Ok, sadness, yes it’s ok for you to be here.’”
That is as simple as it can be; accepting only what is here in the present moment, rather than needing to accept what we perceive to be the entire fate of our life. It feels easier, it brings a moment of compassion and in that we find relief.
Can you accept this moment? And then the next? And then the next…
“Acceptance is not ‘liking’ or being ‘happy with’ the situation, or throwing in the towel and giving up on yourself. It’s a warm invitation, a welcoming, a homecoming of sorts.” - Dani Fagan (@mytms_journey)
Those pesky thoughts
When we feel out of control of what’s going on in our lives, we move to the mind to problem-solve. To try and fix, to get rid of the uncomfortable feelings of uncertainty, to make sense of it all. This often leads to rumination and negative, fearful thoughts on loop. We get overwhelmed and nothing seems possible.
For support with overwhelm, take a look at my journaling guide for overwhelm.
Our thoughts give us a sense of being in control but often they’re not true, they’re the result of the state of our nervous system and the state of resistance is usually fear, frustration, shame, none of which offer us a sense of safety. We then stay locked in that sympathetic fight or flight state which leads to a physical sense of rigidity, feeling trapped, stuck, unsettled, irritable in our present circumstance, a state which exacerbates the symptoms we feel.
If we’re in resistance, our thoughts can lead us to all sorts of different storylines and realities that keep us in that trapped state.
Maybe we’re wishing we’re somewhere else, wishing our reality was different, telling ourselves it will always be this way and there’s no point in trying to change it, leading to hopelessness and a lack of motivation.
Maybe resistance ends up making us unhelpfully push ourselves, in denial of our current reality, so that we end up with more symptoms and then thoughts turn to self-judgement, shame or being hard on ourselves.
Maybe non-acceptance leads to thoughts of endless seeking and never-ending research to find the ‘one thing’ that will help us heal, that will allow us to fix ourselves.
Bringing awareness to our thoughts and becoming mindful of the stories we’re telling ourselves, means we can begin to challenge them and notice where they’re creating secondary arrows of suffering, like hopelessness, self-judgement or lack of motivation.
‘Thoughts are a way of resisting a reality, of trying to control things. Radical acceptance begins when you shift your attention from the storyline, from the thoughts to the felt experience in the body, to what’s actually going on inside the body. An undoing of resistance to reality.’ - Tara Brach
It can be helpful to come out of the mind and into the body when we notice our thoughts are in a downward spiral. As a coaching client of mine said, ‘The mind thinks, the heart knows.’
Come into your body and sense into the sensations that are there - a tightness in your chest, a heaviness in your shoulders, a gripping in your back, a holding in your belly? Are there any emotions that are calling for your attention? Is there something you need? How would it feel to accept the sensation of that emotion and sit with it, breathe with it, let it be there?
Some questions for when you’re overthinking…
Is what I’m thinking really true? What might be a more true and helpful way of looking at this?
What’s the impact these thoughts are having on me?
How could I bring more compassion to my thoughts?
What emotion am I feeling right now?
What do I need?
Do these thoughts point to a belief I hold about myself? Is this belief really true? Whose voice do I hear when I tell myself this story?
Through having more control over our body and mind, we can pull ourselves back into the present moment, and through the present moment, we can bring ourselves into more acceptance.
Trust and belief
Often it can be difficult to find acceptance because of what is uncertain and unknown. Dealing with uncertainty can be a fearful and uncomfortable place to be, both with or without chronic symptoms, but especially if we’re questioning things like when we’re going to recover or whether recovery programmes will help.
Again it comes down to control. We can’t be certain of the outcome and therefore our nervous system feels like it can’t prepare ourselves for what might be ahead. We can’t know or be certain of the future and so it feels like we have no control. There is an element of what feels like putting ourselves in the hands of fate which is the part of acceptance that can feel like giving in.
But are we ever fully in control, can we ever be truly 100% certain of any outcome, regardless of the situation?
Ask yourself, if you knew the timescale and the ‘how’ of getting better, would that allow you to accept? Would that allow you to stop resisting and be where you are, knowing that what you want most will come? Is it about uncertainty and the ‘not knowing’ of your future?
Focus instead on what you can control, which is your choice in how you respond.
I chose to respond using a mantra in my recovery, something I still use often to this day:
Trust in Uncertainty
Uncertainty comes walking hand-in-hand with fear and it is trust that allows you to dance with that fear. To acknowledge fear and choose to trust anyway takes courage and belief, which is where it can be helpful to borrow the beliefs of others who’re recovering or have recovered if that’s something you find difficult.
To build trust and belief…
Watch or listen to hopeful recovery stories on Youtube or podcasts (you can find my recovery interviews with Raelan Agle or Heal with Liz on Youtube).
Lean into hope - read more about keeping hope in recovery here.
Try journaling. Here’s some prompts that might help:
Define what hope means to you.
What does it feel like in your body?
What colour is it? How does it feel to reflect on hope?
Write a list of what brings you hope.
Write about a difficult time when you remained hopeful. What strengths did it bring out in you? How might these strengths help you today?
Find support with journaling and more prompts to build rewarding emotions, like courage, joy, and hope and belief, with my journaling guides.
Change your focus
Our brain is wired to focus on the negative. In its efforts to keep us safe, it functions with a negativity bias that focuses our mind on problems or dangers we might need to take action on or respond to. This feels even more prevalent when our everyday situation brings so much we don’t want or don’t like. Especially when we’re locked in a fight/flight state, our brain goes looking for what’s wrong, what’s lacking, for what we’re unable to do rather than what we’re able.
Intentionally making a choice to change your focus and, instead, bring to mind the good in your life was a hugely helpful tool that helped me with acceptance during my recovery. Very simply, if we feel good about things in our life, even if they’re small things, it feels easier to accept our situation and, with that, the fire of motivation in our heart keeps smouldering.
It can feel like an effort at first, especially when we’re working against the natural bias of the brain. Yet, with practice and intention, it becomes more natural to focus on the good. To see the things you can do, rather than what you can’t. This helps with resistance too, which we know can create suffering.
Not only that, it can actually change your physiology and the state of your nervous system. If we really savour the good in our lives, embodying the feeling it gives us, states like compassion, joy, gratitude, love, it will help to regulate the nervous system, bringing us into a parasympathetic state. From there we feel more hopeful, things seem more possible and uncertainty doesn’t seem so scary - everything we need to help with acceptance.
So, ask yourself…
What small things bring you joy in your day?
Who makes you feel loved and supported?
What could you not imagine having in your life?
What do you love in your environment? The nature you can see out of your window, the breeze you might feel on your face?
When we start looking, there’s actually a lot to feel good about and, even now post-recovery, for me, it’s always the small things.
Try starting a practice writing down 3 good things that have happened each day and what strengths you used to make them happen.
Go gently
The journey to acceptance is hard. It isn’t something that happens overnight or something that sticks around to the same level every hour of every day. Sometimes acceptance comes more easily and sometimes we want to do everything in our power to resist. Wherever you’re at on your journey with acceptance, be kind to yourself. Meet yourself where you’re at. Acceptance is hard and, if it currently feels that way for you, can you let that be?
How can you begin to accept your circumstance just 1% more? What would allow you to do this?
Remember, the biggest thing within your control is your choice in how you respond. And, in that choice, lies the possibility of a breath of ease, relief and compassion for yourself.
Much love,
Suzi xx
P.S. If you’re dealing with challenging emotions on your journey with acceptance, check out my Emotions Journaling Guides for some support or take a look at my 1:1 coaching services.