Long-term illness is not a battle to be “won” – it’s a weight to carry forever

You can’t truly share in pain, or suffering; you can’t share stays in hospital, or scans, or drug treatments.

It’s difficult when you write a column to work out how much to give away; where to draw the line between the bits of your life that you keep private, and the bits that you choose to share. I’ve been skirting around something for a while now. Looking back through recent columns I find mentions of anxiety, and doctor’s appointments; wry jokes about illness, outings undertaken in order to cheer myself up. What I haven’t really made clear is the fact that underlying all this is the ongoing story of Ben’s health.

Anyone who knows us will remember that he was first taken ill back in 1992. He wrote a brilliant memoir, Patient, about the nine weeks he spent in hospital, much of the time in ICU, engaged in a close brush with death. Decades have passed since that episode of high drama, and most people assume it is all in the past. Our life since then looks like a classic story of winning out over adversity.

But that’s not the whole truth. Ben’s illness is treatable, not curable. He lives still with its flare-ups and consequences – well, we both do. And the last 18 months have been particularly gruelling.

Last January we released our first Everything but the Girl track in 24 years, a prelude to the album which was due in spring. By February, though, Ben had spent a night in A&E, with me by his side. By the end of that week he was in hospital for a surgical procedure, then readmitted three days later with an infection.

Our second track, “Caution to the Wind”, had its first radio play while he was hospitalised. We each listened separately – him in bed and me at home, and celebrated with each other via text. It was strange and surreal. This joyful project we’d embarked on together, and which looked to the world like such a triumphant comeback – it was heartbreaking to be experiencing it in this way.

I don’t want to dwell on all the medical details of the next few months – suffice to say Ben got through it, and we released the album, and it WAS a triumph. But I do want to talk about the psychological burden of dealing with long-term illness.

Looking back to 1992, when this all started, I realise that Ben and I were only 29 years old, and were utterly traumatised by what happened. But no one talked much then about mental health. PTSD was for war veterans, and no one ever suggested we have counselling to cope with the flashbacks or triggering episodes. He’d nearly died, and I had sat helplessly by, watching him suffer and nearly die, and that did something to each of us.

We can both feel impatient now with the way illness is discussed in public, where it is framed as a battle to be won. Positivity is the key! You have to boss your illness! You have to kick it in the balls! We grit our teeth when this language permeates the discourse. It simply isn’t helpful in relation to something that lasts so long.

There isn’t much understanding of what it feels like to live with a long-term condition, and perhaps even less of what it feels like to live with someone who is living with that. My role is so vague as to feel invisible. I’d say that I share in Ben’s predicament, but that isn’t quite it. You can’t truly share pain or suffering; you can’t share stays in hospital, or scans, or drug treatments. All I think I can say is that I witness it. And that takes its own toll.

Sometimes it grinds us both down, and sometimes the strain pulls us in different directions. Right now we are in the middle of another crisis, which means some imminent hospital time, and then medical treatments at home, and an uncertain outcome. More waiting, more intrusion into a normal life, more trying to stay cheerful.

We’ll watch some films, and listen to some music, and play some Scrabble. We’ll get through it, we always do. We are heroic, and we have got this! But if you tell me to stay positive I’ll kick YOU in the f***ing balls.