Why it’s so important to talk about your chronic illness experience (you don’t need to go through this alone)
Why does it feel so alien to talk about your *full* chronic illness experience, and how does your body respond when you do? Have we edited the mere acknowledgement of the full experience out of our consciousness, because it feels too hard, painful and uncomfortable to explore?
To acknowledge - and talk about - everything that’s experienced under ‘The Chronic Illness Struggle’ is a pinnacle point in being able to work with your chronic illness as your guide, Ally and superpower, so how can we do so in a way that’s conducive to moving in that direction, and doesn’t compound what you’re already holding within your body.
We need to normalise and celebrate the safe, supportive spaces in which this release can be made possible.
I’ve been thinking a lot about the process of asking for you to write to me with a question related to your, very unique, chronic illness experience. As a wee reminder, I asked listeners of the Reframing Chronic Illness podcast to send me their struggles, wins, thoughts, reflections…anything really, related to their current experience with chronic illness. Something they felt happy to share that they wanted a response to.
With the gift of hindsight, I’ve begun to see that perhaps I didn’t quite appreciate how much I was asking. Sharing this stuff isn’t easy, especially when you’re expecting your response to be broadcasted! So first and foremost, I want to take this time to really thank those that wrote in, as well as those of you that listened, because although each of our chronic illness experience is very unique to us, we also share so much of what it’s like.
In the conversations I had with those of you who did write in, I was privy to a bit of what it was like for you to ‘go there’, and on the whole, the response was that it was confronting, it felt vulnerable, it felt releasing and somewhat freeing, and that actually it was both really helpful and hard to listen to the response, especially when it came to me reading out the original question. There was almost a sense of shit, that’s me…
I’m going to bang on about it again - I will for as long as I need to - but this just shows how much the conversation around what it’s actually like to live with chronic illness needs to expand. I know there’s not the time during consultations these days, and it’s things like podcasts and blogs and social media where people are able to seek validation and confirmation that the way they’re feeling is somewhat ‘normal’ or to be expected, considering what’s happening with their body. But what gets me I think, is that this is often after people have lived the struggle for so long, and I’m forever on the fence about ‘everything in its right place’ vs not needing to go through all of that.
I look at my partner, who was diagnosed with (and only started experiencing) IBD after watching me struggle with my chronic illness for 7 odd years (before finding this way of life in which I work with my chronic illness, where it’s my Ally and my guide and my superpower) and I see how he’s benefitted from seeing the two sides of the coin, and almost being fast tracked in not having to go through that whole stage of fighting his body and his chronic illness. Of course it’s a very imperfect process for him, because it’s still relatively new and, like us all at any stage in our chronic illness journeys, he very much needs to experience things for himself and experiment. But his entry point has been at a place where he’s learning to work with - and learning to accept not fight or try to bury - his chronic illness from the get go. And that is so calming and reassuring to see.
All that to say… there’s a huge amount of emotion - and often trauma - bundled in with chronic illness, both from the precursor perspective and the present/during perspective. All that doubting and questioning and rejecting and fighting yourself takes its toll. Not to mention the very physical side - including the huge events - we experience, and how that’s held within our bodies.
But it's talked about as secondary, it’s treated as secondary. And it’s not… its high primary. I think we are starting to see some acknowledgement of it in the mainstream, which I applaud, but I think there are some really simple things that could be done that aren’t, via information can only really come from us, from the people who live these experiences. That feedback loop isn’t open, we’re not being heard and often, we don’t actually know to talk about it (or feel comfortable to talk about it), because of the hierarchy that exists within healthcare systems, because of the segregation and cutting up of parts that exists within the healthcare system (like, how could your skin condition possibly be connected to your anxiety, right?!)
Anyway, this is turning into a rant and it’s not meant to be, let’s get back on track!
My point is that, when you notice feelings of resistance and fear come up when you even begin to think about your chronic illness experience, let alone talk about it, it's totally understandable and needs to be explored.
Facing that stuff is hard, and we’re not used to it. Instead, we’re used to pushing it down, ignoring it, and we’re definitely not taught that it’s actually really necessary to connect those feelings and experiences. It’s really only in spaces like therapy, coaching, and some of the more holistic health practices that we do get to talk about it, or honestly even acknowledge it. And the thought of having therapy or coaching for living with chronic illness is still like what?! It’s probably a bit taboo. Like imagine saying, oh I’m off for an appointment with my chronic illness coach… I’m a chronic illness coach and that sounds bizarre to me!! But of course, it’s not, it’s just not a sentence that has been said for that long in history!
Support and guidance and open, safe spaces need to be normalised and celebrated… because if not in these spaces, where do we release that stuff? Where do we let it out, where do we acknowledge and give credit to what’s actually going on for us… and get those realisations? Those downloads? And the opportunity to do something about it.
Probably not with our friends or family for fear of being a burden, for feelings of shame… for belief that if we give it air time, it’ll become real and will consume us. Again, social media has a huge part to play here and there are people out there doing some really great things, but social media alone, in my opinion, can’t offer the level of supported or opportunity for progression that’s needed (correct me if I’m wrong, ); it’s too fast moving, it’s too short form and snippety, and the context in which that information is absorbed isn’t conducive to what’s required to properly process and assimilate. Of course, it’s great for community and connection (maybe too much!), but even those community spaces can become quite unhealthy or unhelpful places to hang out, because whilst they can give you a lot, they can also drain you.
For a long time, when I didn’t - and hadn’t - had a place to release that stuff, I would get full involuntary body shakes when I talked in any depth about my experience, when I actually acknowledged it, as it all moved through my body. That’s changed now; it’s almost as if all of that held stuff has been released over the time I’ve been working with my chronic illness as my ally, since I left ‘The Struggle’.
Think of how that energy, that muscle memory, that emotion and trauma is being held in the body - and the effect it has on the way chronic illness manifests, the compounding of that - if when that valve (the voice) is opened, the body is taken over in that way.
P.S. I’m aware how culty this language sounds… I don’t really know what to do about that other than to acknowledge it and reassure you there is no culty-ness going on!!
I vividly remember the very first time I got that opportunity; I was sat in an acupuncturists treatment room having my initial assessment and I was asked to talk through the whole thing (after I had written it down). I’m really grateful that the environment I was sitting in was calming and warm and cosy, because although I got the shakes thing, the environment and the person sitting opposite me really helped support me! But I was genuinely taken aback that I was being asked to talk through everything and asked about more than what they saw in front of them; they saw past my eczema - past a ‘problem’ - and into it all. I could have walked out of the room there and then, happy and feeling like I’d already received what I needed, even though it was only the beginning.
I want to briefly touch on the school of thought that says talking about past experiences or going back through history can re-traumatise; I get that and I stand firmly by the practice of not going places that don’t feel safe to go until, if, you’re ready. But I also know how helpful and cathartic it can be and that generally, the tendency is to not talk, to ignore and push it down. I’d say only do what feels safe to you in that moment. When it doesn’t, say so. When it feels uncomfortable, explore that and look at what the reason behind that discomfort could be. Is it because, as my listeners who wrote in experienced, it’s unfamiliar, feels vulnerable and is an expansion of a comfort zone, whilst also there being a feeling of wanting to go there? Or is it because your body and brain is saying absolutely not; in which case, you get to start looking at where you need to be supported from where you are right now.
I also want to caveat all of this by acknowledging that trauma and feelings and emotions and history and experience, whilst all connected are not the same.
This avoidance of how much of something we allow ourselves to experience… so much of that comes from this fear of pain and discomfort the human race carries.
I talk about this in more depth in Your Chronic Illness Ally, but pain and discomfort are so much more than something to be feared and suppressed as soon as they rear their heads.
There are ways of experiencing them that we can learn from, that provide information, that feel safe and grounded. And just like that treatment room that was warm and calm and nurturing, there’s a way of experiencing pain and discomfort in environments that feel safe. Which is why inner safety and environment are two of the foundational modules in YCIA.
You might remember back to episodes 7 and 8 where the listener who wrote in and talked about experiencing an uptake in symptoms when they went through anything that was ‘extreme’ - including happiness, excitement, sadness, grief, temperatures - doesn’t that speak to the power of chronic illness? That if we don’t take note of the feelings and sensations that are designed to alert us to danger, that trigger a warning signal or alert us that we need to do something. If we don’t acknowledge that nudge and block that path with a dam, then the force of the water will find another path, perhaps through other sensations and feelings and emotions that we tend to consider as neutral or good.
I know it’s not as cut and dry as that, but it’s something to consider.
Although it goes against everything we’ve been conditioned to believe to be right, and to an extent goes against what our bodies tell us is right - after all, pain & discomfort signal danger - it’s really important that we do face these things that feel uncomfortable, that we don’t shove pain away and retract ourselves from it, without sitting with it, exploring it, getting as comfortable as we can with it, and learning from it.
It’s almost as if we’ve come to a stage in human evolution where we believe we should only experience what’s classed as ‘good’ or beneficial emotions and feelings and sensations. We’ve removed the value from anything else. But that means we’re only getting access to half the story. A ‘bad’ sensation is just as important as a ‘good’ one; there’s no hierarchy.
As I say on the Your Chronic Illness Ally home page; we’ve been taught it’s normal to silence one of the most important sources of intelligence our bodies have to offer us.
I use lots of what could be considered ‘positive’ language in my work, and that could perhaps be construed as glossing over any of the underbelly of what it’s like to live with chronic illness.
But if you’ve been here for a while, you’ll know its very much the opposite. All of that ‘positive’ language such as Ally and superpower includes full acknowledgement of that underbelly. It says that there is a whole experience to be experienced and all of it is hugely valuable information. My work and my chronic illness philosophy teaches you how to experience the full spectrum of what your body is asking you to feel, so that you can hear what you need to hear, in a way that’s safe & grounded. It allows you to experiment in a way that’s cushioned, and that most importantly doesn’t compound the active, symptomatic side of your chronic illness.
I’m Alana, Chronic Illness Coach, Writer and Podcaster
After 10 years of trying to fix, fight and ‘cure’ my chronic illness, I decided to chuck away the rule book and instead embrace my chronic illness as my guide, ally and superpower… and I’ve never been happier or healthier!
