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.
Life is not dissimilar to what
everyone has experienced
“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
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 and Lee managing to have a good time at a wedding last year.