Two Roads

(the cycle of relapses and wellness)

Nov 2025

I see life with episodic debilitating illness as like driving along one of two roads that run parallel to each other.

The "good one" is the road of normal, and “the bad one" is the road of anxiety, pain, symptoms. The strange thing is, it’s almost impossible to imagine the road you’re not on. That road is a ghost road.

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This is a pity, because of course there is a transition road too, with traffic lights, and various signage. But the signage is confusing, and some of it is frightening, and if you slow down or speed up at the lights, you may miss the turning, or careen into a lake. When in the midst of anxiety, you can’t think clearly, but all you do is think. You blunder about making stupid mistakes because it’s so hard to focus, and it’s so hard to keep the inner voice of impending catastrophe at bay. Oh you have tools, sure but they rarely work consistently, because the anxiety shape-shifts and always, at the back of your mind there is the fear that you’re doing the wrong thing.

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The solution, the only solution, is to reconcile the one person with the other. Because you are both people and each requires compassion. If you fight the one, you are also fighting the other. In  accepting the vulnerable you, the one who feels keenly their loss of identity, their autonomy, who is constrained and fearful, then you are also able to be the other - the one who does so many things, who has so much energy, who people are drawn to, and who tries to save the world. And as it turns out, the ‘bad’ you does have things to offer. This shadow self is actually revealing truths that you need, (although you want them right now like a hole in the head) that will ultimately enrich your life. If you accept "bad you" and listen to her, you are not giving up or giving in, but opening a portal into who you really are.

*Lisa Feldman Barrett. https://www.myrtolegaki.com/thinking/get-your-butterflies-in-formation-a-new-way-to-think-about-stress

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The Anxiety-Shame Vortex

Feb 2025

In her book Wishful Drinking, Carrie Fisher - actor, author, and as Princess Leia in Star Wars, bearer of hair resembling a mouflon's head apparatus, wrote that “living with manic depression* takes a tremendous amount of balls” and that people living and functioning at all with the illness should be given medals rather than be subject to lingering stigma. I whole-heartedly agree, and would also like to formally extend this sentiment to those suffering from any debilitating chronic illness, be it “mental” or "physical" (a false dichotomy in any case). Enduring a dis-ease, particularly one that robs you of your identity and your equanimity, and that makes day to day “normal” tasks seem like momentous challenges, whilst functioning at all, deserves hearty applause. Anxiety is one of the most pernicious "secondary" symptoms of chronic illness sufferers and the most common mental disorder*. It's largely invisible, so it's hard for others to understand that their friend/partner/child/neighbour on the bus, is malfunctioning.

* now generally termed bipolar disorder

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When anxiety is long-lasting and extreme, anything else is impossible. Why? Because, at it's heart, and certainly in an evolutionary sense, anxiety is fear of death. It's an adaptive set of physiological reactions that facilitate survival. If there's a tiger present, we need to activate all our sensorimotor bells and whistles to stop ourselves being mauled. It stands to reason that other tasks (elegantly wrapping a birthday present, appraising the FTSE all-share-index-methodology) are not priority for our mind-bodies. Inevitably then, anxiety makes us stupid in the scenario of modern living. And what comes along when we feel stupid? Shame, my friend, great gobs of the stuff! And when we act from a place of shame we don’t engage with the world, we’re not open and the distance between us and the ‘normies’ increases. So yes, to get through a day with a semblance of functionality, to reorganise our personal worlds to accommodate the anxiety-shame vortex without plunging headlong into the abyss, is nothing less than heroic.

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What’s more, if you are lucky enough to be out of relapse and in remission, you must inevitably build your life back again, and again, reorganising the pieces, recreating your narrative for the thousandth time, or creating a new one. Not to mention attempting to restore the shattered wasteland that is your finances. Job security and episodic chronic illness do not go hand in hand! When you experience debilitating chronic illness you enter a different world- if you’re lucky only for a time – but such luck can be a double-edged sword because you are on borrowed time. The things that others take for granted- the continuity and associated achievement of long-term goals will inevitably be interrupted, hijacked, or redirected.

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