Perspective 2020

6 PERSPECTIVE 2020 In this humbling account, Rose Stanley, wife of long term Crohn’s sufferer Lee, shares her experiences of how, together, they tackle the daily challenges of living with the disease. It reminds us of why efficient monitoring, to help individuals manage the condition themselves, is so important. “I’ve been with my husband for twenty eight years and he’s been ‘sick’ for twenty seven and a half of them and life is not dissimilar to what everyone has experienced during lockdown. Specifically, short notice cancellations, you can’t do what you want when you want and you are 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 actually 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, even 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 about it too. 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 own job sees me working with all types of people and in the past I’ve found myself standing on a stage or doing an interview, evangelising about the positive change the business makes with young people, whilst flicking glances at my phone in case I need to get back early if there’s a problem. And, jokingly Lee points out on a regular basis that I’d be nothing without him! And I agree. Not just because of the slack he has picked 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 is what I find the hardest. I can’t even pretend I haven’t thought ‘Well! now you know what I feel like!’ when everyone else’s trips got cancelled at short notice this summer due to the pandemic. 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.” Lee writes a regular blog that includes accounts of his experience of using the BÜHLMANN IBDoc® calprotectin home test: Things you only know if… Your partner has a chronic illness: Rose Stanley Rose and Lee managing to have a good time at a wedding last year.   Life is not dissimilar to what everyone has experienced during lock-down.