“Troubles overcome are good to tell.”
Yiddish proverb (Primo Levi, The Periodic Table)
It would be so, so much easier to gloss over the last couple of decades of my life, put it all behind me and move on. Maintain a public façade of Insta-style fabulousness and easy Mediterranean living.
But, no. I never take the easy option (annoyingly for me).
I’m not quite sure where to start, how to tell the story – it seems so complex – and I’m not one to dwell on the past. Plus, I really don’t need to tell anyone about this. With regard to my own health, it doesn’t make a difference whether I’m believed, or even if I’m right. I’ve recovered, that’s all that matters.
But this feels Important and Worth Sharing. So deep breath, here we go: I want to tell you about the difficult few years I’ve had, and what I’ve discovered as a result.
It’s been HARD. I’ve been really, really physically fucked. But I was determined to fix my body and get to the bottom of what was wrong, after discovering that following the advice of the medical profession had damaged me and made me unwell. It’s taken 7 years. For 5 of them, I basically dropped out of life in focused pursuit of recovery, sacrificing the (painful, disrupted, isolated) now for a future where my body worked.
It’s been a process of undoing. A process both of minimal intervention, of letting my body right itself, and of seriously hard work to fix and correct and heal (and figure out what was happening). So even though I’ve not been well at all – because re-establishing proper function after it was suppressed for so long is very disruptive – I knew it wasn’t because there was something awry, but because I was finally getting better. I increasingly became aware that it wasn’t an external illness that needed treatment, but rather a process that had an end point. And so I haven’t seen a doctor in …ooh, let me think… six years.
Through trial and error, observation and research, what I have discovered is astonishing, radical and unusual: I haven’t got an autoimmune condition that attacks the central nervous system like I was told (diagnosed with MS 2002); instead I’ve had a blocked lymphatic system (for sure) due to a lifelong fungal infection and resulting overgrowth (I think), centred in my pelvis and spreading throughout my entire body. This caused an accumulation of fluid that damaged nerves and tissues and generally stopped my body from working like it should.
I’m just about fixed. All this extra stuff my body wasn’t able to get rid of for years has more or less cleared now, and the damage it did has nearly healed. But not quite. I wanted so much to write this in the past tense – the healing all done and dusted. But this is a present perfect kind of a story – stuff that happened in the past that still has an impact on the now.
While I’m confident that my explanation is correct on a broad scale, it’s unproven except to myself. Yet. I worry I won’t be believed or taken seriously. I fear being misunderstood, accused of self-diagnosis by Dr Google or following some wellness trend on Goop. I feel like a radical scientist shouting ideas that go against the grain of current thinking. A maverick. It’s not been easy to keep my chin up and stick to what I know to be true.
I have struggled to explain how I know all this; the visible indicators (and there are some, though it’s mostly internal) are too subtle – or too personal – for anyone who’s not looking closely to notice. Only I know the details of the past context, what I’ve been doing to recover, what I’ve seen and how it feels. It’s me alone that’s constantly updated with the latest information, holding all the threads and able to connect all the dots.
It’s not been easy either to talk about what was going on with me on a day-to-day level, to explain how I knew the big picture of what was happening* and how medical intervention (conventional or alternative) wouldn’t help. To get across that feeling awful and being unable to do things were necessary steps along the healing path. That it was a process that would take some time.
The world just saw me as unwell and rather disabled – suddenly, because for years I had hidden the slow degeneration and daily low-level shitness and carried on like I was fine. Put it in a box in the corner (until that box was overflowing and had to be dealt with). And my body managed to get along by compensating for weaknesses, papering over the cracks, then papering over the paper. For years.
In recent years, some have dismissed me as stubborn for not trotting along to the doctor. Most listened sympathetically but didn’t really understand, couldn’t really see what I was getting at. My recovery has not happened in the usual way that everyone can relate to.
And I have been more unwell than ever, I can’t deny it. But I had a mission and I knew I’d reach the end point eventually. Project Fix Me: a constantly evolving slow process. I’ve had to be patient and determined. I didn’t know what was wrong until I started trying to fix it. I just knew that all my pains, weaknesses and disabilities were not what I’d been told they were. And the more I discovered, unpeeling the layers upon layers to get to that original crack, the more right I knew I was.
Very early on I started to understand the MS diagnosis differently, as a red herring that had nothing to do with what was actually going on. But it is also the reason why things got so bad that I was forced to face my health problems head on.
What I can tell you is that the human body is amazing! Too often we feel the need to intervene in the name of medical treatment and just end up making a mess of it. My yoga teacher used to say “After the doing comes the undoing” – this is how I saw it.
So over the next couple of weeks I’m going to post what I hope is the full account of my health life. I start off by setting the context, all the stuff that happened to me 20 years ago that ended up with me being a physical wreck by the end of 2013, at the age of 35.
Then I want to tell you the more interesting part. How I’ve fixed myself, the journey of discovery I’ve been on, the untangling of a complicated knot. It’s an intricate web of interrelated causes and effects, like a complex machine of many parts – this connected to that, which has an impact on that other thing, etc, etc – so I hope it all makes sense.
But maybe I’m not the only one. While I’m telling you what happened to me and how I have discovered what I have, I also hope to share a lot of what I’ve learned about how the body works and what can go wrong. I’ve yet to approach the medical profession to tackle that misdiagnosis and seek confirmation of what I know. It’s my task for the decade ahead.
*I wasn’t always right about the daily details.
NEXT: MS diagnosis