The biggest lesson from my autoimmune disease

Fixing the hole in the bucket

Gratuitous cat image by From Marwool on Unsplash

The worst part of my journey with autoimmune disease felt like a huge black cloud of clinical depression.

I was in my mid-30s, doing what many 30-somethings do – exploring the world, building a career, partying, dating, seeking a soulmate. But some days my energy would be so crushingly low that I could barely scrape my limbs off the mattress, barely string sentences together, or speak without slurring my words.

Tired doesn’t even begin to capture it.

Crushed comes a little closer. Like a giant boulder fell from the sky and flattened me and I didn’t have an ounce of strength to lift it. Whoever invented the phrase bone-crushingly tired may well have had an autoimmune disease.

It can be a despairing space when the mind is a fog and there is not one ounce of fuel in the tank.

Other weeks, my system would run on the borrowed energy of adrenaline, buzzing away like a refrigerator, racy, wired, unable to sleep.

It seems strange to say with hindsight, but it was all such a blur that for a long time I didn’t realise something was wrong. I thought it was just me. I thought I was just failing at the life others seemed to manage so effortlessly.

Eventually, a sore throat that didn’t shift for weeks led me to blood tests, which led to a diagnosis of Hashimoto’s disease¹.

More than 15 years have passed since that moment, and it has been a long and windy road, with detours, road bumps, and potholes along the way. My antibody levels, once wildly abnormal, are now back in the healthy range, where they have stayed consistently for some years.

Getting there has been a painful, frustratingly slow process of learning and listening and becoming intimately acquainted with the language of my body.

When you receive a diagnosis of chronic illness, it can feel like the body is your enemy. It stops you in your tracks and derails the life plans your mind has been busily attaching to. But I’ve come to believe that the body is always working on our behalf, and that our symptoms and illnesses can be a loud and highly inconvenient expression of what is out of balance in our lives. They can be pointing the way towards wholeness if we can accept the challenge of what they are asking us to address and change.

As I look back from where I am now, I can loosely group my recovery into three phases.

In the early years, I followed the standard medical advice, took pills, had regular blood tests, and accepted that I had a life-long condition. This helped to reduce symptoms to some extent but didn’t address the underlying root causes. My original GP told me my condition was incurable and would likely get worse as I got older.

I’ve always had a stubborn streak, and I refused to accept this as the end of the story. Alongside traditional Western treatment, I began to explore a range of holistic healing modalities. I learned that herbs, diet, and various types of bodywork could make a tangible difference, putting energy and resources back into my empty bucket. I learned that I could influence how my body felt by what I put into it (and what I cut out), and the fabric of my day-to-day life began to improve in significant ways.

But it’s not enough to keep putting resources into the bucket if the bucket is continually emptying itself.

Although on the surface it looked like I was doing all the right things and living a ‘healthy’ lifestyle, there was a vital piece missing that took much longer to understand.

The clues came from my learning in the fields of somatic psychology and yoga.

A central part of somatic psychology work is nervous system regulation. If our nervous system lives too much of the time in an overactivated fight/flight state, or a disconnected, shutdown, freeze state, our battery drains fast. This sounds obvious in many ways, but often flies under the radar of our awareness. If we’ve always lived with a highly sensitive nervous system, we don’t know anything else is possible. It’s like asking a fish about the water it’s swimming in – what water?

Research is beginning to tell us that a dysregulated nervous system heightens inflammation in the body, impairs immune functioning, and sets the scene for a host of illnesses, including autoimmune disease. Writers and thinkers like Gabor Maté, Bessel van der Kolk, and Lissa Rankin² have been central in introducing this perspective into the field of medicine. It’s one of the pieces that are missing when we only look at ourselves as a cluster of body parts and symptoms.

A lightbulb went on for me when I realised my nervous system was the hole that was continually draining my bucket.

Sometimes the body is asking us to reduce external stressors - saying no, setting boundaries, doing less, leaving a stressful job, or removing ourselves from a toxic situation.  Other times it’s about how we are responding to the external world that’s key - how we are showing up in our internal world.

I could be sitting on my couch at home, but if my mind is running an old story of threat, fear, and catastrophe, my tank will be draining. I could be working hard and up against a deadline, but if I’m breathing well, calm, and grounded in my system, the toll on my body will be less.

I’ve learned that my body is often expending more energy than the demands of the situation require. And I’m slowly learning how to recalibrate this, moment by moment, how to dial down the efforting, and the nervous system activation, while still showing up fully to my life.

There are a myriad of practices that have supported me in making this shift - more on these another day - but the cornerstone of everything has been embodied awareness. Developing a capacity to feel and notice the underlying tone of my body and my nervous system in any given moment and learning how to steer this ship from within.

It’s an ongoing calibration. After a particularly intense few months in the first half of this year, there’s a payback in the second half. It’s like I’ve overspent the budget and that debt must be repaid. Adrenaline is a costly form of fuel. The body keeps the score and hands me an invoice in the form of flattened energy, absent life force, and grumbling symptoms. It demands an extended period of energy conservation and tender loving care to rebalance the books.

I’m becoming used to this delicate dance these days and have learned that the best solution is not to overspend in the first place. To stay within budget by leaning into a simple, gentle lifestyle. Unfortunately, the demands of the external world don’t always cooperate with this and there are times when an overspend seems unavoidable.

My autoimmune disease is largely stable these days, but I’m finding that the challenges and lessons of perimenopause are remarkably similar and require the same calibration. The state of my nervous system is a huge driver of my hormonal health. At least I’m travelling through this potentially turbulent transition well-practiced at listening to the nuances of body and energy. It makes a real difference.

How we navigate this kind of healing journey is very personal and I don’t believe in a one-size-fits-all cookie-cutter approach. However, I do believe it starts with curiosity and being willing to sit with the confronting question of what is out of kilter in our lives and ourselves. Illness does not happen in a vacuum and our bodies are often communicating something, however confronting that message may be.

I have much more to say on this subject, which I’ll save for another day, but in the meantime I’d love to hear from you. Have you been faced with chronic illness? What discoveries have you made? And what has supported you back towards wellness? Do you notice your own nervous system having an impact on your health and energy? And what helps you to stay regulated in the face of life’s demands? As ever, I really value your comments and feedback.

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1. Hashimoto’s disease is an autoimmune condition that affects the thyroid gland, and since the thyroid is involved in regulating so many other systems of the body, from digestion, to energy, temperature, and reproduction, it’s a disease that can affect just about everything.

2. For some further reading around this subject I suggest:

Maté, G. & Maté, D. (2022) The Myth of Normal: Trauma, illness and healing in a toxic culture. New York: Avery

Rankin, L. (2022) Sacred Medicine. Sounds True

Van der Kolk, B.A. (2015) The Body Keeps The Score. New York: Penguin Books.