Last week, May 19th, was World IBD Day – a day which covers five continents across the globe, in a bid to support the ten million people currently living with Inflammatory Bowel Disease. Led by charities and patient support groups, the global hashtag for World IBD Day is #BreakTheSilence, which makes it feel a fitting time for this relaunch to take place, after a slightly longer than anticipated hiatus.
Events run all over the world, both virtual and face-to-face, ranging from campaigns designed to encourage patients to share their personal stories and raise awareness, to virtual tea parties, fundraisers and teleconferences.
The global purpose has always been to break the silence and help make the world we live in a more informed and tolerant one.
This year’s World IBD Day carries a different weight to it somehow. As we begin to emerge from a global pandemic which has seen the whole world grind to a halt with lockdowns, shielding, social distancing and masks, it feels even more important that people gain greater insight into what it means to live everyday with a hidden disability.
How Does It Feel?
I suppose that’s the billion dollar question, isn’t it?
I always say that it’s impossible to answer how it feels to live with Crohn’s Disease because, having spent my life with it, I know no different way of living.
For me, life with Crohn’s really is Just : Life.
That said, COVID has certainly made me more acutely aware of the impact on our day-to-day life. There’s no denying that it hasn’t been fun to be reminded so regularly of my fragility. Being branded Clinically Extremely Vulnerable, and seeing that stamped at the top of every NHS communication for the past fourteen months does little for the inner warrior.
Even Warriors Need Protection
Yet even the strongest of fighters need protection sometimes. In some ways, the shielding shield has provided the necessary cover to accept the frustrating truth that my illness, and the treatments I am on to keep it under control, put me at greater risk of this hideous virus than the average person my age.
So what does that mean? I wrote, just over a year ago, about The New Normal a term which I know some people found problematic, perceiving it as resignation to a life of distance and isolation and fear of life beyond our own safety bubble.
On the contrary, I was simply trying to accept the rapidly changing world, and acknowledge that most of the changes were way beyond our control.
At the time, it was impossible to envisage how long any of the restrictions would last. Still in the very early stages of the first lockdown, we wouldn’t have believed it if someone had tried to tell us what the next twelve months had in store. Nor would we have wanted to know.
In August last year, when the shielding guidance changed and the world opened up for most people, very fleetingly I might add, it suddenly became much harder for us to be selective about what felt safe and what still didn’t.
In truth, most things still filled us with dread and fear. Not that we didn’t want to return to some semblance of normality – of course we did – just that being with other people, in public places, meant we had no idea how many degrees of separation there would be between us and the virus.
Even less idea than we had when we stayed shut away indoors.
I suppose that brings me to where we are now. As each new milestone on the elusive roadmap is reached, people are craving a return to normality even more desperately than they were before.
But What Does That Mean For IBD?
The agenda for World IBD Day according to Crohn’s and Colitis UK is not to go back to normal. Instead, their goal is to go forward to something better, enabling people with Crohn’s and Colitis to be better cared for and supported in the workplace.
This is not something I have ever really considered before, but it seems to make sense. Not just in terms of working conditions, but in life more generally.
A Matter Of Perspective
I often talk about perspective, because I genuinely believe it is one of the few things it is within our power to change and control. Way back when I was training as a wide-eyed, idealistic Applied Theatre student, I remember being taught that we would never be able to change the world, no matter how hard we tried, but we could empower people with the ability and the desire to respond differently to it.
That lesson still rings in my ears when I consider life and the challenges it throws in our way. Do I wish we could erase COVID and return to where we were on March 14th 2020 – just one day before my first work cancellation came through and our lives were flipped upside down?
Of course I do. Just as much as everyone else out there. Would I give anything to have back the things the pandemic has taken from me? The lost time, the hugs, the togetherness, the income, the house we lost, the ability to say goodbye to my beloved dad…I would take it all back in a heartbeat if I could.
Accept The Things We Cannot Change
It would be pointless to yearn for any of this. We can’t erase COVID any more than we can rebalance the loss / gain scales of the past fourteen months.
So that leaves us with one consideration – how to move forward. For some of us, the threat of the virus remains just as acute as it was at the start. In many ways, as the world opens up and people begin to relax, the threat for us actually becomes greater. Yet life has to go on. COVID has made it clear that it is definitely not going anywhere, so we have to learn to live alongside it.
Much like learning to live alongside a chronic illness – pretty quickly living with ______ becomes Just : Living.
Moving Forward Mindfully
Perhaps we can all commit to being mindful of the gains from the past fourteen months, however minor they may seem. Those could be improvements in your own work-life balance, more family time, new hobbies, connections with people across the globe, improved fitness or they could be more outward facing gains. Maybe you have been helping a neighbour, running zoom events for charity or simply taking time to notice those around you a little bit more.
Whatever those positive changes are, hold onto them. Let’s not, in our hurry to get back to normal abandon everything we have taken on. Let’s try, in the words of Crohn’s and Colitis UK, to create a world where everyone feels understood and supported to live their best life.
It Always Starts With A Chat
So, as I try to brave the new world beyond our safety bubble, my pledge is to keep the conversations going. I will do one of the things I do best; I will talk. With more frequency, about more things and just as openly as ever. In honour of World IBD Day 2021, not only will I always love purple (and wear it at every chance I get!) but I will break the silence and get my blog back on.
Let’s all try our hardest to get back to living.