Why healing chronic illness looks different for everyone
When we experience chronic symptoms in illnesses like ME/CFS, we come to know our own experience and set of symptoms with a familiarity we didn’t sign up for. Yet, that familiarity is not the same between all of us. The set of symptoms one person experiences from the next can be totally different.
Just as the way we experience the illness can be different, so is the healing journey we each go on. It’s easy to compare ourselves to what we see happening to others or to the stories they tell. We hear something that worked for them and we obsess over it being the thing we need to do for ourselves. But we are all unique beings, with different experiences, different needs and different ways of being.
When we understand the illness from a mindbody approach, as nervous system dysregulation, it’s easy to see why the healing journey looks so different for everyone. The origin of what creates and leads our nervous systems to be dysregulated is different so it makes sense that the level of focus on certain aspects of healing will be different between each of us.
With this understanding, we’re liberated to find our own unique path that’s related to our own needs and where we are on our own journey. We can find the pieces of the puzzle that are relevant to our own story, instead of comparing ourselves to someone else’s. We can focus on the cracks and holes yearning to be lovingly filled rather than worrying that, because something worked for someone else and not us, it means we’re a lost cause. Finding the combination of what we need, unique to our own journey, can free us from comparison and anxiety as we recover, and also free us from the set of symptoms that holds us where we are.
Why chronic illness (and therefore healing it) looks different for everyone…
1. Self-awareness
The first step to any change is awareness. We cannot begin to heal something - a coping mechanism, a fear, a habit - until we have become conscious of it. Maybe you’re so self-aware you know every thought and behaviour pattern, or maybe you’re yet to observe yourself with such a level of detachment. If you are disconnected from yourself, your level of self-awareness might be something you need to cultivate to begin understanding the thoughts, patterns, behaviours, emotions you need to address. We’ll all be at different levels of self-awareness and of relating to ourselves so our ability to become conscious of what needs healing is unique to where we find ourselves.
When we’re able to grow and master self-awareness, we can begin to cultivate an observer self. We can detach ourselves from emotions, pain and traumatic experiences, and see them as a separate part to our whole self or true self. We see them as something we can heal.
For example, when it comes to the emotion of shame, rather than thinking, ‘I am bad,’ or, ‘there is something wrong with me,’ we can think, ‘I feel bad,’ or, ‘there is a part of me that feels broken,’ and we’re able to begin to heal that part, rather than staying stuck and identified with shame.
Ways to cultivate self-awareness
Mindfulness meditation - a simple breath meditation can go a long way to cultivate your observer self. I like the Insight Timer app for free meditations.
Journaling - my favourite way to cultivate self-awareness. Reflecting on how you feel, on what’s going on in your life in the present or past, on your dreams and inspirations, on the emotions you feel is a brilliant way to connect with yourself and become aware of your thoughts, behaviours and feelings. If you want prompts, tips and support with this, check out my journaling guides or this journaling technique for emotions.
Mindful movement - gentle, slow movement, like Qi Gong or Yin Yoga, can be a beautiful way to practise self-awareness, particularly in coming to know and understanding your body more, a really important aspect of healing.
2. Your relationship with yourself
We’re all at different stages of creating the loving, accepting relationship with ourselves required, not just for healing, but for a life of meaning, connection and joy. Some are just at the beginning of this journey, some are closer to connecting with their true selves from a place of compassion and acceptance. It may be that you need to embrace self-forgiveness and self-acceptance or you may need to connect to your heart with self-compassion instead of self-criticism. It may be reconnecting with your likes, your wants, your desires and needs after a life of disconnection and people-pleasing. It is likely connecting to your inner child and offering her what she needs, learning to reparent with a soothing, nurturing, loving presence.
Building a loving, compassionate relationship with yourself is vital. Not only because of the safety this gives to the nervous system, but because building a relationship of respect and trust with the different parts of you who’re asking to be heard will free your soul and free the things that are locked in your system as dangerous and disconnecting.
A core part of the 1:1 coaching I offer is often helping you build the relationship with yourself so you can support yourself to heal. If you need help with this, I’d love to support you to love yourself again.
Try these short exercises if you feel you need to build self-esteem or self-compassion - take a self-compassion break or a self-appreciation break. I also have journaling guides for these topics available on my shop.
A trip to the Lake District as I was recovering. I had soooo many layers on and a hot water bottle underneath my clothes. Not even the snow could stop me!
3. Layers of conditioning and coping mechanisms
This aspect ties into our self-awareness. If we have good self-awareness, once we begin observing our coping mechanisms and patterns, i.e. perfectionism, people-pleasing and control, we will be able to notice the patterns and begin to spot what triggers them more easily than if we lack self-awareness.
The environments we grew up in were different. We all experienced different caregivers and different situations so the way we learned to respond is different. We may never have noticed or realised that things like perfectionism or overachieving are in fact coping mechanisms because they have always been praised by those around us and by society. Some people may have done a lot of work to change these behaviours already, not realising it’s connected to the level of tension and chronic symptoms showing up in their body. Maybe you have spotted the behaviour but there is emotional work to be done to heal any shame, sadness or anger felt by your inner child in response to the situations these behaviours were born out of.
Although the patterns of behaviour we exhibit when we experience chronic symptoms are common - perfectionism, people-pleasing, suppressing our emotions, suppressing our needs, good girl programming, keeping ourselves small, putting others before ourselves* - the level to which we use one or all of them is different in each of us.
*Gabor Mate’s book, ‘When The Body Says No,’ is very informative as to how behaviour patterns like these show up in illness.
4. Level of trauma and disconnection
This aspect is tied into the relationship we have with ourselves, particularly if we have gone through a traumatic experience that has disconnected us from our bodies. With trauma, it’s common to dissociate from your self and your emotions as a way of protection and survival because the experience was too painful to face or accept, particularly as a child. As Gabor Mate explains, ‘Trauma is not what happens to you, it’s what happens inside you as a result of what happens to you.’
Similar to the coping mechanisms and conditioning we experience, no level or experience of trauma can be compared. The way we experience something inside of ourselves is completely unique to the individual. The path to healing this trauma will, therefore, be unique but the way to do so is through the body. Somatic work is vital for this.
As we’re healing chronic symptoms, a common belief is that trauma work doesn’t relate to us because we had a happy childhood and nothing significant or adverse happened to us that would be classed as ‘big’ trauma. However, if we didn’t get our emotional needs met, or we were in an environment that made us feel unloved, rejected, abandoned or alone, that is traumatic to the developing brain of a child who relies on their caregivers for protection and survival, sometimes known as ‘little trauma’.
Some common ‘little trauma’ situations:
You didn’t feel like you belonged to your family unit
You didn’t feel understood or like your opinions were listened to
You were constantly criticised and never praised
The view of life that was offered to you was always pessimistic
You weren’t given hugs, soothing or affection from a parent when you were distressed
Your emotions weren’t validated, things were made to seem like ‘no big deal’ or ‘not the end of the world’
You experienced constant pressure to achieve good grades
Healing trauma work includes soothing and reparenting your inner child. Validating her emotions, her experience and offering her what she needed at the time and didn’t receive. Another reason why the relationship we have with ourselves and our inner child is so important.
I recommend Bessel Van Der Kolk and Gabor Mate’s work as well as the following Instagram accounts for understanding trauma work:
@the.holistic.psychologist
@sarahbcoaching
@healwithbritt
@cfsschool and @primaltrust_official (recovery programmes that offer techniques for trauma resolution)
5. Levels of resistance
If you have a brain, you will experience resistance! On the healing journey, we’re trying to change our brain, our thought patterns, our behaviours, our mindset, our beliefs, all the things our brain has adopted to keep us safe and make sense of the world. When you begin healing work and as you continue through it, for your brain, you’re rocking the boat. As the brain wants to conserve energy and operate on known and well-worn neural pathways not new ones, when you start to change them it really doesn’t like it. So it puts up the fight you’ll experience as resistance and, again - (are you noticing a theme here?) - the levels of resistance we have to work through will be different for all of us.
It also relies on our self-awareness and observer self to be able to pinpoint what’s happening as resistance.
Resistance shows up as emotions, very often fear and frustration, or thoughts like,
‘It’s too hard’
‘Visualisations don’t work for me’
‘I can’t be bothered doing this work’
‘It’s not fair I have to do this work’
‘It’s taking too long, what’s the point?’
‘I wish I didn’t have to do this work’
‘I don’t know if this is going to help me’
‘I’m in the middle of something, I don’t want to stop and do healing work’
Ways to work with resistance
Cultivate a strong sense of your true self so that you can see fear for what it is and allow yourself to feel it and continue on anyway, once you have validated and soothed it.
Build your sense of trust in how wildly capable you are. Make sure you celebrate your wins and track any progress as you go.
See the healing journey and the work involved as an act of compassion and self-love, that you are choosing to care for yourself because you respect yourself.
Keep in mind your motivation, your ‘why’ for doing the work, and all the dreams you have for your life.
Keep hold of your belief that recovery is possible and watch recovery interviews of others to keep this strong.
At one point, I would take my wheelchair out with me incase and I would end up just pushing it myself, until my courage and belief became strong enough, I know I didn’t need it anymore.
6. Level of understanding and education around nervous system dysregulation
This can be an overlooked aspect of healing, and it can also be more important for some, depending on how you take in and understand information. For example, it helps me to understand the science involved, for some people that’s not important.
Understanding WHY we’re doing the work we’re doing, how it’s working in our body, why we came to be ill in the first place, how our present day is keeping us sick, how we can help ourselves - these all come from the education we have around our illness. It can be hugely validating, it can shift our focus away from ‘getting rid’ of symptoms and eliminate fear around it, as well as keep our motivation and belief going when it wavers.
7. Our history and relationship with the illness
The first thing I want to stress about this is that being ill for a long time or having severe symptoms does NOT mean you’re less likely to recover. I am proof of that. I had chronic symptoms for 18 years and, in my most severe relapse, I spent nearly 3 full years entirely bedbound, only able to go to the toilet. I went 6 months before I was able to have a proper bath outside of my bed and even that was with the help of an electric bath lift. I was disabled. Now, I have trekked for hours in the jungle in Thailand and climbed the highest mountain in England. Recovery is possible for you.
However, what does create differences in our history and relationship with the illness, and therefore differences on our healing journey, is the following:
The identity we attach to it
Core beliefs about ourselves, i.e. victim consciousness
The fear we have around the illness
Medical trauma and experiencing the illness itself as a traumatic experience
These are all things we can work to change and process the associated emotions. You are not sentenced to a life of illness if you’ve been dealing with severe symptoms for a long time.
8. Our support systems
An important part of nervous system regulation is co-regulation with others. We are social beings, we are not meant to do this work, or any part of life, alone. Our nervous systems respond to each other as we come into contact with others. We can feel safe, soothed and calm in the presence of others, or we can feel the opposite. Finding support you feel safe with is an important aspect of the healing journey.
Another aspect to this is not allowing yourself to receive support, feeling like you can’t ask for help or feeling you should be able to do this work alone. This actually likely indicates a trauma response or coping mechanism that may have been adopted out of hyper independence, i.e. you didn’t get the help you needed or your emotional needs weren’t met as a child so you learned to do things alone or cope alone. Examining these beliefs to allow yourself to get the support you need can be a helpful step on your journey.
If you’re looking for support with any of the points raised above, I would love to be there as a compassionate guide for you. Please feel free to contact me or book a free 20 minute connection call to ask any questions you may have.
Your journey
As you can hopefully see now, we are all so different in how we have experienced our life, our illness and ourselves up to the point of starting our healing journeys. We are beautiful, unique, individual beings and what we may need more or less of as we recover will be different.
I hope this exploration gives you the confidence that, as you come to know yourself better and know what you need along the different stages of recovery, you will find what works for you. Use others as inspiration but try not to compare your story to theirs. We all have our own story to tell.
Sending you much love,
Suzi x
P.S. I am currently taking on clients for my Health Recovery Coaching. I invite you to check out the details and, if it feels aligned with what you need, please feel free to contact me or book a free 20 minute connection call.