I’ve been with my husband twenty eight years and he’s been ‘sick’ for twenty seven and a half of them and it’s not dissimilar to lock-down. Cancellations, can’t do what you want when you want, often having to put other people’s health before your own!
When you make your wedding vows, like when you listen to the small print in an advert you agree to ‘in sickness and in health’ but you rarely comprehend what that means. Even if you think you know what you’re signing up to.
Lee and I married on our tenth anniversary by which time he already had two major operations for Crohn’s disease. I thought I knew what I was dealing with.
It didn’t put me off. I didn’t have a second thought about the commitment I was taking on. If you’ve ever loved, you’ll know what it’s like to want to walk the ends of the earth for your partner. Ever the optimist, our quests to find a cure have seen us chasing the world’s leading doctors in Australia and America, trying all sorts of mad cap diets, experimenting with worms! At times it’s been like a scene from ‘Lorenzo’s oil’ in our house.
And the money. It costs a lot to be sick. Prescriptions, supplements, probiotics, consultant fees, hospital parking fees, healthy eating, loss of income. It’s a financial burden not to be underestimated.
What I didn’t comprehend though was the daily toil on the mind. Both our minds. Dust yourself off and start again. That’s tiring. When you have to do it weekly or even daily. Its always two steps forward, one step back.
Crohn’s disease is a hidden illness and an embarrassing illness so people stop asking you too. We don’t get asked to dinner much understandably (the diet!), we don’t get asked to those ‘families going away together’ weekends as we’ll invariably cancel. And if I’m honest he doesn’t even like to socialise anymore. In one of his blogs ‘10 things not to say to a Crohn’s patient’ number 1 on the list ‘well you look ok?’ He’d just rather not put himself in the room in the first place.
It’s probably made us stronger, we’re fairly indestructible. When you watch someone in so much pain or stand by helplessly thinking they’re going to die. It kinda focuses you on what’s important. That the kids have a loving dad, that I have a loving husband. We rarely row and when we do we resolve it quickly. It seems pointless expending the energy that we need to save for other more significant matters.
And I admire him so much for the fight, for the resistance to what seems at times like torture, for the times he leads a business meeting with a head full of fog and a stomach full of cramps.
My work as a social entrepreneur sees me working with all types of people and in the past I’ve found myself standing on a stage or doing TV interview, evangelising about social impact and positive change and flicking glances at my phone in case I need to get back early cos its just got too much at home.
And jokingly Lee points out on a regular basis that I’d be nothing without him! To that end I concur. Not just because of the slack he picks up over the years in home care and childcare but also because ironically, so many career decisions have been made as a result of putting my family first. I didn’t necessarily choose to do a lot of the things I’ve done, they just fitted with what my family needed from me, be that hard fast cash or just flexible hours. But not least, because when it all gets overwhelming he’s there, solid in his support to pick up the pieces.
I’m definitely no saint. I feel sorry for us a lot. I wistfully watch as friends travel and socialise, as not being able to travel, that’s what I find the hardest. I can’t even pretend I haven’t thought ‘ha!’ When everyone’s trips got cancelled this summer at short notice – ‘now you know what I feel like!’
But I am grateful. As ridiculous as it sounds I’m grateful for all the beautiful things people do when you least expect it. A kind text, a knowing nod, an offer of support. And for the ever present rock, that is my family, my wonderful family and friends support network.
Living with illness is humbling and insightful. You realise everyone’s got their challenges to deal with and you’ll often have no idea. Unless you ask.