ME/CFS, POTS, IBS… Moving out of Self-Destruction Mode
Unwinding the Downward Spiral of “Chronic Healing”
Me in 2021, on a road trip through France with my newfound love while still dealing with debilitating chronic fatigue syndrome and many other symptoms. I had decided to start living my life instead of waiting until I healed. I was so tired of waiting for healing, which by then had not happened sustainably for almost a decade.
The trip had its ups and downs, but it definitely reconnected me with life. Despite doing many things beyond my body's habitual capacity, I did not die. Instead, I started truly healing.
(Don’t worry, I won’t be recommending to just push your body in this article.)
The Sequence
Let’s talk about a healing sequence that I experienced personally and observed in many clients dealing with chronic invisible illnesses such as CFS, IBS/SIBO, POTS, PCOS, fibromyalgia, and similar conditions. This sequence progresses from believing "there is something wrong with me that needs to be identified and eradicated" to "I can allow myself to move towards what I need."
Or more concretely:
From “I must kill that thing in me that makes me suffer”
to “I know how to take care of myself and therefore don’t have to suffer.”
The Downward Spiral
For years, that was me: I had all sorts of horrible symptoms that kept me bedridden most days. And for years, I spent the little energy I had scouring the internet and every obscure subreddit, searching for what was wrong with me, trying to find a cure, instead of acknowledging how incredibly under-resourced I was in multiple areas and allowing myself to move towards those resources.
From clients, I hear a version of the same downward spiraling story over and over again:
I had a chronic symptom (or symptoms) that was not going away on its own, so I tried antibiotics (or herbals/anti-virals…), which didn’t help or only helped for some time.
Then I took another round, which also didn’t help. Then I decided to stop invasive treatments, as by now I had developed quite a few side effects.
Instead, I started restricting my diet and/or fasting. Maybe I went keto, paleo, or even carnivore. All the while, I was taking a myriad of supplements to try and manage my symptoms.
All of that stressed my system out even more, so my cortisol was chronically dysregulated, my metabolism tanked, my thyroid function went down, and if female, my reproductive health suffered, leading to conditions like PCOS or PMDD, or losing my cycle altogether.
I also developed more and more sensitivities to foods, chemicals, sounds, light, people, so I isolated more and more – and got more and more stressed.
The belief that something is wrong within me solidified and more and more tests came back positive with actual findings. More and more symptoms emerged.
It’s a vicious downward spiral, born out of a belief system that I want to elaborate on today.
Understanding the Pattern
From a very young age, many of us become dissociated from the pain of not having enough love, understanding, support, money, high-quality stimulation, and other crucial resources. When we re-associate with this pain and acknowledge our needs, sustainable healing can finally occur.
So, how is this harmful pattern formed? How does it play out, and what does it result in? More importantly, how can we support ourselves in transitioning out of it?
The Formation of a Harmful Mindset
Children are inherently needy — they can’t feed themselves, choose their social interactions, or even hold their own heads up. Adults confronted with a child’s neediness may react negatively if they haven't integrated their own neediness, their own vulnerability.
Disclaimer: This isn't about blaming parents and caregivers but understanding a common dynamic shaped by collective historical events. This is/was just the point where the evolution of consciousness and healthy interdependence is at: the very beginning.
Now that we got that out of the way, we can take a breath and move on:
If a parent’s inner child is regularly shamed and silenced for having or expressing needs, it’s likely that they will shame and silence their child’s needs as well. Often, this happens in covert ways, where the direct link between the need and the shaming of the child is not obvious. Most often, it will not even be within the awareness of the adult. They will feel subconsciously triggered by neediness but, as their own inner neediness is repressed and therefore a part of their shadow, they might not be aware of the mechanics of this trigger.
Likely no parent will ever say: “I am so disgusted by your needing my love, so I will tell you that you are a naughty child in order to make myself feel better.”
If this happened, it would be bad enough, but it would be a bit easier to disentangle afterward. Instead, what happens is much more subtle and harder to grasp.
Children, being inherently dependent, by default identify with their parents' worldview: "Something is wrong with me, and my neediness is unwelcome and will be punished." This identification ensures the survival bond between child and parent. Consequently, the child internalizes three beliefs that later form the foundation for the chronic sickness spiral trajectory:
Something is inherently wrong with me.
Having and expressing a need is somehow linked to me being inherently wrong.
Silencing my needs gets me love, acceptance (or in dire cases, at least the absence of punishment).
Naturally, as these children grow up, they don’t learn healthy ways to feel, express, or take action towards meeting their needs. This results in many unmet needs and a chronic lack of resources necessary for survival, mental and physical health, and thriving.
Photo by Helena Lopes on Unsplash
The Consequences of Chronically Unmet Needs
When needs remain unaddressed, a chronic lack of resources develops. Without enough love, support, money, the right nourishment, or stimulation, we suffer. Our health declines because our minds, bodies, and spirits lack what they need to function and live out their potential. But because of the dynamic I explored above, instead of recognizing this direct cause, we go straight to blaming our inherent wrongness for our lack of wellness, leading to a cycle of self-blame and misguided efforts to "fix" ourselves.
If we were able to feel our suffering and lack of resources directly, it would be much easier to address. Instead, we disown our needs and believe that being unwell, fatigued and apathetic are all pointers for some disturbance in our system.
This is where various narratives that match that belief find their way into our reality: such as having a (reactivating) virus, a parasite, gut dysbiosis, some vitamin deficiency, or a random chemical imbalance in the brain. These diagnoses often come from authority figures who resemble those who initially told us something was wrong with us in several ways, perpetuating the cycle of shame, control, and invalidation.
A word of nuance: I am not against Western medicine and there is a time and place for naming a frequently occurring pattern (aka diagnosis), and there is certainly a time and place for mindfully administered medication or surgery. And…everything has its downsides and the shadows of the medical and pharmaceutical systems are significant without a doubt. If it contributes to further dissociation from your own experience, invalidates you, and takes your power away from you, it is definitely not serving your health and evolution, but the ones who receive your power.
The Journey Back to Health
If we want to find our way back to health, we have to go back to the point of disconnect from the validity of our own experience.
Healing involves shifting focus from "fixing what’s wrong" to "acknowledging and meeting our needs." And most importantly, it requires letting go of the delusion that fixing ourselves will bring us love and belonging, like it once sort of did in our childhood. This requires reconnecting with the validity of our own experiences and needs.
We need to get in touch with the present moment mind/body/soul experience of needing something again.
Needing love and not having any or enough of it.
Needing attention, validation, and understanding…
Needing healthy containment, discipline, clearly and lovingly communicated boundaries…
Needing safety, support, and the relaxation of true belonging …
Needing sufficient physical resources so we are able to sustain our autonomy…
Needing the right food, movement, and hygiene that our system requires…
Without re-associating with this pain that inadvertently lives inside a diseased body – feeling it and taking mindful, intentional action to create change – it’s going to be very difficult to heal.
Photo by Markus Spiske on Unsplash
Trees support each other by redistributing resources among themselves. No tree decides that it shouldn’t need water, light, nutrients and symbiotic relationships with other organisms.
Practical Example of Reconnecting with a Need
To re-associate with our needs, we first need to become aware of all the ego defenses stacked on top of them: My parents were great, they did their best, I don’t even need love, I’m an introvert, a lone wolf, I love being alone, I’m highly sensitive, I don’t fit in because I’m too…, modern society is too…for me, etc.
Or in the case of money: I don’t need money, I’m fine being poor, My internal life is fulfilling enough, I’m great at saving money, I don’t want to participate in the rat race/in capitalism, I would have to sacrifice my integrity for money, I am too sensitive to earn a lot, this economy is too unstable for me to even try, etc.
Then, once you’ve worked through those (for example, in a journaling session or with the help of a practitioner):
Ask your body: Where do I feel the lack of __?
Let’s take love as an example.
Tune into your body and use descriptive words. It could look like this:
I feel the lack of love as an ever-expanding dark grey ocean of pain in my chest. It feels like I’m going to drown in it. It’s so overpowering. After feeling into it and staying with it for a while, it turns into sharp rocks that cut into my tissue. Now it moves into my throat, constricting it, turning into a big black balloon, making it hard to breathe or swallow, and so on…
After having attuned to this pain, now you know that it’s there, and you can offer it a deal: I’m not going to ignore you or silence you with stories I tell myself to protect me. I am actually going to use my power to do something about it:
I can intend to create more space for love in my life.
I can take action by clearing and mindfully engaging with anything that stands in the way: all the stories and fears, all the pain, all the strategies that I might have inherited from previous generations, all the protective shapes that I automatically take on in the face of love.
I can start intentionally communicating more with people and following through on intuitive nudges.
I can make time for the things that I would like to do with a loved one and do them by myself.
I can ask for help.
Of course, love is just an example.
Once we start moving in the direction of meeting our own needs, there is a lot of work waiting for us—no need to sugarcoat or deny that—but it is much more fruitful and satisfying than the work of chasing and killing the thing that makes us wrong and soothing ourselves with the delusion that all those resources that we are lacking right now will just magically appear in our life once we have fixed and “healed” ourselves.
To summarize:
We have to shift our focus from:
“Once I find and fix what is wrong with me, I will have what I want.”
to: “There is nothing wrong with me; I am just lacking something that I have to start moving towards.”
In order to attract something into my life, I must:
Acknowledge and feel that I need it
Intend for it to come into my life
Create energetic and physical space for it
In small, gentle, manageable steps, take action towards it
Tend to it once it starts appearing in my life
Why is This Transition So Important?
Because it opens up a very different trajectory from that downward “chronic healing” spiral.
Life will cater to our intentions. If you’re focusing on finding out what is wrong with you, you will find more things that are wrong with you.
If you focus on the things that you actually need, you will slowly move towards a more resourced and healthy life.
Reflective Questions
To help you start this journey, consider journaling about the following questions:
Where is my spirit/my psychic awareness now? Feel into your body and ask where your awareness is. Is it in your body or stuck somewhere else? Breathe it back into your body and notice any resistance.
Pick one symptom and ask: If my symptom was a child, how old would it be? What might it need? And how might I give it to it whether in my imagination or in real life?
How would my life look if I weren’t sick?
List things you would do and reflect on how you can focus on these things now, even in small ways. You might get something like: I would have many friends, I would have money and a job that I like, and I would have so much fun, doing things I enjoy, I would exercise and travel and….then ask yourself: How am I focusing on these things right now? Am I undertaking any steps, whether that is inner work, or actual small steps, that are not fighting my illness to get them? So if I listed having friends → am I (within the scope of my current capacity) communicating with my friends via text or phone, or am I clearing pain and programming from past friendships out of my space?
And if I wrote down I would have a job I love: Am I thinking/journaling about what this job would look and feel like? Am I researching what steps I might have to take to get it? Am I messaging other people who already have this job asking them for their advice? Am I setting up some kind of portfolio or online presence or anything? Again, am I clearing conditioning and old stories that live in my internal environment that tell me that I am not smart, that there is no money in that, that I will run into too much difficulty, and that I will be judged and ridiculed and such…
Notice that, with all those things: I only listed things that one could do while still very sick and bedridden. Because it is about being slow and gentle and just taking mini steps, responding to your own needs.
Your body will thank you for it – and those little vulnerable aspects of you who are creating symptoms so you will hear their needs, will slowly calm down.
