Health Update: I Have Lyme Disease
As some of you who know me will have heard, I have Lyme disease.
My private lab results came back a few weeks ago confirming me for an immune response to Borrelia, the bacteria that causes Lyme, along with a whole slew of other co-infections that are often conjunct with it. I read this news while in the fish & chip shop and almost started dancing a happy jig, tears in my eyes, wanted to throw my arms in the air and whoop for joy!! Because I was riddled with bacteria. An odd thing to be celebrating, but after 10 years of searching it means I now know what’s happening in my body, at least to a much larger degree, and, it means I have a prognosis, a path. A hope to be healthy with some solid, actionable steps! What a thing, what a relief, is (relative) solidity to someone who has been roiling around in nebulous, maddening ambiguity and unknowing for such a long time…
I have been misdiagnosed by the NHS for 10 years.
10 years of my life at a level of suffering that has consistently warranted the use of the word torture. 10 years of my life, my youth, how different would it have been had I known sooner?
Governmental medical care the world around is inordinately inept at detecting, and too treating these conditions, oddly behind the cutting edge of scientific understanding and obstinately refusing to catch up. Offering treatments that even risk worsening the condition despite contemporary studies indicating better options. There are millions suffering, many who die or commit suicide. Many whose whole lives are consumed by crushing pain and left to rot bedbound.
It is estimated that 620,000+ people are diagnosed with Lyme disease every year, imagine how many go undiagnosed. It is a humanitarian crisis on a grand scale, and one little spoken about.
Think of all those suffering needlessly. Massive swathes of Lyme patients are forced to seek private or alternative sources of healing, on their own dime, trawling through scattered pieces of information across Facebook groups, back-corner web pages, fringe books, and word of mouth, to find something that can help them.
It is a gross negligence of care to be fighting for your life and having to painstakingly research and piece together your own diagnosis, prognosis, and support.
Too, a great failure of our official institutions for those of lesser means to be gated from effective testing and treatment. There are a few organisations around the world specialising in these conditions and utilising the cutting-edge research, but they are privately funded and their rates are exclusionarily expensive.
More personally, it’s an odd one, and I’ve been holding back to share about this while I’ve been processing. For years I’ve thought that my disease is dis-ease, a term I’ve invested in fully, believing I had exclusively auto-immune issues and working with philosophies along the lines of the work of Gabor Maté and Bessel van der Kolk that my unhealth was caused by a psychic rebellion, trapped trauma, inauthenticity of being, a pattern that I could shift if I just delved a little deeper, let go a little farther, accessed the bottoms of the roots of the wound and healed them, loved them back to wholeness, causing the inflammatory cascade to stop.
This wasn’t just wishful thinking either, beyond hearing countless accounts of success from others, I’ve had some extraordinary experiences first-hand that led me to believe I was on the right track.
Going to the top of the hills in the midst of an excruciating flare up, on the verge of giving up my life, my arthritic knuckles almost the size of pingpong balls, and, having nothing left to lose, finally, fully allowing myself to feel — crying and shrieking and sobbing, hundreds of millilitres (excuse the image) of mucus coming out of my body as I released the trapped pain, terror and grief that’d been keeping my nervous system in a vice-grip for months, and seeing, literally seeing, my swollen joints receding down to 60–70% better within an hour. I wish I’d caught it on video to show you all. I cried in awed revelation, feeling I’d discovered fire, and was living the cutting edge of understanding what was possible with the body, holding a message that the world, millions upon millions of us struggling with auto-immune issues, needed to hear. Radical authenticity heals! Feeling heals!
Another time, again on the very lip of caving in, in this instance thinking of getting back on the complex medication I’d worked tooth and nail for over a year to get out of my body (including two gruelling months flushing my system through a flurry of enemas in an Ayurvedic hospital, again, sorry for the image), the pain too unbearable to continue, I had another big release — and this time it wasn’t just an allowing of trapped “darkness”, or the heavier emotions, but of trapped light. I said enough is enough, refound my sense of beauty, confidence, aliveness, expression. My meness. My spirit. My emphatic recognition and love for myself. I felt returned into my body as I reclaimed my innocent, awe-struck living child, staring at the mountains with complete glee and gasping with wonder, knowing, living, my right to feel this alive — and again, I saw my symptoms recede dramatically within a short window.
I’ve been been a sort of a spokesperson of this angle, and have even been writing a book about it — feeling it was my mission to share this particular nugget with us all, calling for a revolution in our understanding of health. I’ve posted such overt proclamations as “chronic disease is accrued unbeing”, or “my disease is the constantine pressure of my spirit disallowed.” At times it felt like this was my exact calling, my role in this life, and that I had been guided to it, lived what I had lived, just to be able to teach this — all of it wonderfully justified by that recognition. It’s been an odd transition to discover there is an explicitly “physiological” cause to my unhealth and that the weight of healing is not exclusively on my emotional shoulders, my absolute responsibility in terms of inner-delving, that I didn’t just need to love myself deeper, take it onto the burden of my mental health or spiritual path, but that I just might need some bloody antibiotics or a powerful herbal medicine protocol to start to kill off the literal invaders inhabiting my body.
I’d been told and had been operating under the maxim “there is no magic pill” for years, and yet, after all of that… There kind of might be.
It has been such a strange adjustment, a sort of recategorising of my life over the last years — from the difficulty of my faith in my spiritual path being put into question, what it all means, to the recognising the time lost, but too allowing me to see my journey in a kinder, less shaming light — to find out the enormous struggle to socialise, the constant jagged deregulation of my nervous system, my inability to think straight, much of the paranoia and terror and feelings of fragility I have endured, were not my fault. Or not some failure of the depth of my inner work, just needing to go a little further, garner a little more will…
Some of this stuff is mine, I’m certainly not perfect, and unhealth can exacerbate and magnify that which is already there, drawing out our pre-existing patterns that in a highly deregulated state become huge, looming versions of themselves (whereas when we’re well we might be able to keep a handle on them), but much of it is not, not mine, and that is a wild thing to fathom. All of those moments I was rejected for my awkwardness, struggled to fit in, lacked energy, brain power. All that struggle, or the particular level of heat of it, with my mental health, my paranoic thoughts, my disassociation, my irritability, my hyper-sensitivity and intolerance to certain stimuli… It was in some vast and significant way the Lyme.
It has made sense of much of my past. My nervous system was engaged in mortal combat against millions of invasive organisms. I was stuck in adrenal fight or flight because I was literally fighting for my life. All. The. Time. And this had an enormous knock on effect on my system, exhausting my nerves, crippling my ability to regulate my emotions, my capacity to navigate the emotionally complex states of human relating. It had a profound effect on my personality and sense of self.
Since discovering the news, and too being advised by the holistic doctor who initially theorised I have Lyme that I no longer need to eat so austerely, after a year of living dietarily for the most part like a disciplined monk, I’ve been enjoying this shift from such savage levels of self-responsibility. Before, I was metering nearly my every action, controlling and hyper-vigilantly micromanaging many aspects of my life, and throwing myself into highly exposing environments, shamanic plant medicine work, inner-work workshops, an intensive men’s group, thinking I just needed to dig deeper, to find the core root of my illness. It was brutally exposing, humiliating even, to be so utterly unwell and trying to stand in the eye of the storm and do this massive, outward effort of exploring — while being watched by others — my darkest shadows, most of which I thought belonged to my soul, not knowing they were the ripples of a besieged and systemically overloaded body. It has been such a vast relief to shift into this new understanding, at least at first, to let some pressure off the fight and relax into “ah, I am struggling for an explicit, physiological reason, no wonder it’s been hard!”, to just allow myself to be ill.
It has shown me enormously that mental wellness, qualities like tolerance, kindness, our capacity to give and hear and be a good human, are incredibly dependent on the physical foundations they stand on: a healthy brain, a happy life, a calm and easeful nervous system.
Pain, constant-suffering, stress, make you cranky, difficult, hard work. Even beyond just the physiological destitution, too, from the traumatic effect that sort of incessant bombardment has on your psyche. It it hard to overstate this, and I feel a fire in my stomach writing it against the vast misunderstanding and lack of compassion I have at times received: it wasn’t just on me. It wasn’t just my problem. I wish you all had known.
Though of course we still must be responsible to who we are, regardless of our circumstances, and I have made a dogged effort to remain kind and compassionate, and this matters.
So, now what? Now I start treatment, and I am lucky enough to still have a head on my shoulders, despite the neuropsychiatric onslaught, that has proven capable enough to slowly dissect the reams of information a Lyme diagnosis comes with. I’m lucky enough to have found, via the connections I have, some of the leading support available on the subject, Lyme literate herbalists and specialists around the UK, and a lovely neighbour who has had Lyme for 40 years and has been an amazing aid!
But too I need you all. I need my community. I need to be gathered around. Please, if you know me and feel to call me, reach out, hang out, send me your love, over the next months, do so. Not just for the next three days this piece may be present in your conscience, but for the months, potentially longer, my journey will be ongoing. I would dearly appreciate you! “Chronic illness is not just for Christmas”! (if you don’t hear this for me, hear it for your other friends who are facing an ongoing fight, whether it be “mental” or “physical”, the constant gruellingness of which can be hard to fully appreciate), and my struggle at the moment is immense with the Herxing and all of my symptoms going haywire. I feel fraught, mad, most days, experiencing extreme exhaustion, strange hallucinogenic states, inflammatory symptoms, and excruciating, constant nerve pain. Sometimes the mental states of despair and terror I fall into frighten me half to death. It is so hard to put into words just how back breakingly hard this is… There is a battle ongoing for my life and I need support. To be loved matters so, so much! Sometimes, I believe a wee bit of connection is the best medicine in the world.
Treatment will be herbal to begin with, Lyme is one illness where herbs are explicitly not second rate to allopathy, agreed upon amongst many medical Lyme specialists, and perhaps even the most effective option. Antibiotics are also destructive to the gut and can cause more problems than they solve in a condition where detoxification is key (and where do we most readily expel unwanted agents from our bodies? Sorry for the image, etc, etc).
The herbal protocol will attack the Lyme and co-infections and start to remove them from my body. This is causing something known as the Herxheimer reaction, as the organisms go into a state of stress from the herbal or antibiotic reagents breaking their homes and cell walls apart, symptoms heighten, and too from their dead bodies that flood the detoxification pathways of the body, the gut, the liver, that can cause immense toxicity.
And I want to say that my journey these last 10 years was not wasted, it has been deeply rich in myriad ways, nor was the incredible wisdom I wrought through my suffering on the holistic nature of health.
Health is holistic, and inflammation can have many simultaneous causes. Auto-immune issues are also commonly conjunct with Lyme. As too, the immune system’s function, its ability to defend against chronic infection, is multifariously affected by our mental state, our aliveness, our connection to ourselves and our free flow of energy, breath, unrestricted by stuck and stagnant bricks of unprocessed emotion.
This is emphatically true and there still is a revolution of health needed. The inner path still matters, and is still a huge piece of my puzzle. And there are many for whose conditions are radically, if not entirely, caused by emotional blockages and mental patterns of dis-ease, as confirmed by the great work and peer reviewed studies of Maté, Porges, and van der Kolk. We need to hear this, and for anyone reading who is physically unwell, it is always, always worth looking at where you might be holding yourself back, not allowing the beautiful, innate expression of your tears, your anger, your joy, your love, your life. Where your body is saying no for you and you need to listen, and where it is wanting to say yes and not being permitted.
This matters fiercely, is not just more words, more information, but a vital truth of the world that we have to start integrating into our understanding of healing. One that will save countless millions of lives, and countless millions more from suffering.
Not being who we are makes us sick. Being, makes us healthy. But too, sometimes, we need physiological support to shift the tide of what is happening inside us.
