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The Nocebo Effect

8 years ago1,211 words

My previously asymptomatic brain tumour is now symptomatic, after having a conversation about it with the neurologist and dwelling on it without distraction for days. I strongly suspect psychosomatic symptoms rather than literal, physiological growth of the tumour manifesting 'real' symptoms, yet having that belief on the conscious surface of my mind apparently isn't enough to dispel the worrying sensations.

I saw the neurosurgeon last Wednesday, where we discussed my brain tumour and I decided that I didn't want it treated just yet; the fact that it hadn't grown at all in four months suggested that maybe it'd been there for ages anyway, so I'd rather gamble on that uncertainty than choose the definite neurological harm and the year of recovery that surgery would cut out of my life. (Though I was told that the neurological harm from the procedure would affect my gaze and possibly my memory, I've since discovered that he'd be performing an 'interhemispheric transcallosal resection', which involves cutting through the corpus callosum, which connects the hemispheres of the brain. It's thickest above the pineal gland - where my tumour is - and damage to this thick part can potentially result in something called alexia, which is the inability to read. I'd rather avoid that if possible!!)

At first, the fact that the tumour hadn't grown and that I could return to university was 'good' news; better than I'd hoped, and I was immensely relieved immediately afterwards. Receiving support via text from my friend for most of the day helped a whole lot too; I felt soothed, cared for, fortunate.

However, that friend was busy for the days following that, so I was left alone with my thoughts. The relief began to turn to dread and self-pity as I dwelt on the fact that the surgery would cause unavoidable harm and rob a year from my life, and that I'd most likely have to have it someday rather than avoiding it forever. I began reflecting on my myriad failures, the fact that my life at the moment is 'celibate isolation and brain cancer', and I fell into a deep depression which at one point involved me - ostensibly a grown man - curled on the floor in a foetal ball, breathing laboured, eyes shut, wishing I was dead.

So I haven't really had a fun week.

I did however see that friend in the flesh yesterday, which is always nice because it reminds me of how the version of myself that wallows in irrational thoughts and the version that exists in the real world of interpersonal interactions are so vastly different. I just wish I had a chance to be the latter more often. But I will soon, as university resumes again next weekend. I honestly can't wait; I'm sick of this summer. I mean, I'm dreading all the changes that'll be involved too, having to interact with new people mostly, but I long for regular reasons to get out and actually be around other human beings.

I have been finding it interesting watching apparent brain tumour symptoms manifest over the last week though, especially how situational they are, how dependent on remembering to pay attention to them.

Following the consultation with the neurosurgeon, I started having pain atop my head, though I blamed this on the regrowing nerves (my scalp's still partially numb), and tried not to focus on it. As time went on, though, I started having a sort of double vision, which I knew to be one of the potential symptoms, and that knowing and focusing on it seemed to exacerbate it to the point of distraction. It's been accompanied by feelings of vague dissociation; like there's something just 'off' in my perception or sense of being in my body, which I can't quite describe or put my finger on.

When I was with my friend though, these symptoms disappeared... until I remembered I should be worrying about them, then they appeared again.

It's very clearly the nocebo effect - the inverse placebo, where the belief that negative physiological effects will occur causes them to - but it's strange how knowing that in my conscious mind doesn't actually cause the symptoms to disappear. Just like how some placebos can cure even when the user knows that they're placebos.

My friend was talking yesterday about how she doesn't really have anxious thoughts, but experiences clear physiological effects of anxiety regardless. I do too; while waiting to see the neurosurgeon, my thoughts were relatively calm, but my body was anything but. It was tense, butterfly-bellied, fidgety, that kind of thing.

I just find it interesting how intellectual beliefs are so ineffectual compared to deeply-rooted, mostly-subconscious ones. I suppose it's the difference between the cool, rational cortex and the bestial, primal limbic system that controls our emotions. The limbic system, being the primal core atop which the cortex grew relatively recently, is the naked us; the clever, contemplative cortex is clothing covering it, sometimes shed, changeable, playing a less significant role in determining the overall look and form.

I'm reminded of studies about racial prejudice, which found that people tended to be 'racist' deep-down even if they truly believed that they treated every race equally. Though their conscious thoughts might have led to a life spent including others and treating them fairly, subtle, unconscious behaviours and decisions represented a distinct preference for their own race. It wasn't that their inclusive tolerance was pretend in any way; it's just that what they thought they thought was just part of the conscious cortex, the clothing surrounding a limbic system with other, less sensible ideas.

So there are definitely these layers in our minds, and unfortunately the deeper ones are harder to affect through conscious mental activity...

I was looking forward to the idea of 'believing away' my tumour; developing a genuine belief that belief itself could cause or regress tumours, curious to at least see if it'd have any visible effect on the next scan. But no matter how much I try to believe that on the surface, I know of no way to create a truly genuine, deep-rooted conviction entirely free of doubt.

The primary symptom I'm experiencing is a pressure on my scalp, as if my head's in a vice or I'm wearing a tight hat. I'm trying to reassure myself by remembering how I've had this many times in the past, when I've been undergoing times of great stress. But it comes and goes... So I'm sure that it'll be temporary this time, as always. There are certainly many reasons I'd be deeply stressed right now, regardless of what the surface mind might think. And my body language - when I notice it - is stress manifest too; at this moment, my shoulders are tense and hunched, I'm softly chewing my lower lip, my breathing is somewhat shallow, my legs are tight. I keep clenching my jaw. My thoughts are calm and intellectual, but the beast within is agitated.

Anyway. I think writing this out has helped a bit. But there's always that lingering doubt that says "you're only kidding yourself; these symptoms are actually the tumour, and you'll have to miss university and your life will be over and-"... but it's best not to entertain that.