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by Susan Biggar

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It’s almost 25 years since my husband and I nearly wrecked our relationship on a tandem bike trip in Cornwall, England. We were tippy on the starts and out-of-control on stopping, the hills involved huffing and puffing combined with suspicion the other party wasn’t pulling their weight, and we crashed within the first hour of a five-day cycle trip.

But what I particularly recall is my dislike of sitting on the back seat. You can’t see beyond the other person, you have no control over the steering or the brakes, which means you have no influence over where you go or how fast you go there. And, as Darryl told me over his shoulder whenever he was in the front: ‘just sit like a sack of potatoes back there.’ It turns out I’m not much good at that, finding the uncertainty and lack of control stressful.

Now, if there’s one thing we learn early in our lives with CF, it’s that this is an uncertain ride and one that slips quickly out of our control. It’s not only a matter of not being able to see around the next corner, we often can’t even see the corner itself until it’s upon us.

I hated the uncertainty in those early years. I remember one particular night in 1999 when our son Oliver was about one and was in a rough patch with repeated hospitalisations and ongoing lung infections. I was unable to sleep, anxious about his health. Eventually I crawled out of bed, convincing myself that an extra nebuliser might somehow change his future trajectory. Oliver was sound asleep in his cot while I kneeled on the floor, awkwardly holding a mask through the bars of his cot, desperate not to wake him, desperate for something to bump him out of what felt like a downward health spiral, desperate for relief from the worry and uncertainty. Apparently, research has shown symptoms of post-traumatic stress in mothers of ill children and in some patient groups. Hmmm, really? There is also evidence that chronic uncertainty can have a negative impact not only on a person’s quality of life but on illness outcomes.

So, given that living with uncertainty is about the only thing certain about CF, does it help us to know its risks? I think so. And this is why.

We live with a weight of worry that few people do, and it’s not easy. It’s a bit like running a marathon while wearing a 25kg backpack; it definitely can be done, but it’s not for the faint-hearted. Interestingly, there’s a whole little sub-field of health research that studies the impact of ‘uncertainty in illness’ on patients and carers. This is a researchable thing, not just a figment of our illness-raddled imagination.

Also, when I recognise uncertainty as a legitimate stress, it helps me be kinder to myself. Instead of repeating the same old mantra — Why can’t I just stop worrying about this?— I can accept that living with uncertainty is actually really hard and not always within my control. I mean, if I broke my clavicle, I wouldn’t be berating myself for not being back on the netball court two days later, would I?

For me, sometimes finding some certainty — by getting good, consistent information; feeling informed about options; and having a good understanding of CF—can also help ease the strain of uncertainty. And I definitely find it can help to talk to others who are living well with similar levels of unpredictability (like a CF support group).

Ironically, given our history of near marital breakup in Cornwall, a couple of months ago Darryl and I bought a tandem bike. It is actually fun and exhilarating. And, although I still prefer riding on the front, I’m learning to accept the uncertainty and lack of control on the back seat as part of the tandem experience—a part that I won’t let beat me.

 

This article does not necessarily reflect the values of Cystic Fibrosis Community Care