March 8th is International Women’s Day, an annual date in celebration of Women’s Rights. In simple terms, it gives people an opportunity to shine a light on the female icons in our lives – past and present.
This year, on that day, I received an e-mail while standing in the checkout queue at Aldi, watching people panic-buy anything and everything they could get their hands on. It was a message telling me I had been nominated for, and chosen as, The Latte Lounge’s Inspirational Woman of the year. Aside from serving as a welcome reprieve from the chaos unfolding around us, the e-mail was a most unexpected compliment.
Visit the Latte Lounge
Established 4 years ago, and growing to 17,000 members in 65 countries around the world, the Latte Lounge is a virtual coffee shop for women over forty. It is a safe place for them to ‘meet’ and share stories and experiences, offering support to one another and marking common ground. Never has an online space been more important, than in this age of social distancing and stay-at-home isolation.
Obviously, I was taken aback by the accolade, and I was delighted to be invited to write a guest blog post for their site. The post, focusing on living with chronic illness, will be published this week, to coincide with World IBD Day. (I am hoping I will be allowed to join the group to answer anyone’s questions, despite still being on the right side of 40!)
What’s your inspiration?
During a particularly rampant bout of insomnia last week, I found myself thinking about the Latte Lounge’s virtual badge of honour. It prompted me to reflect on what it means to be called inspirational.
You see, I have never viewed myself as anything out of the ordinary. The way I see it, I am a woman who lives with chronic illness, trying never to be beaten by it and striving to live as full and fulfilling a life as I can. I know I am strong and I acknowledge that I have had to be brave. There is no denying that I am a fighter. I am all these things, but I certainly don’t think of myself as inspirational.
From where I’m standing, I just get on with life in the only way I know how – with as much positivity and inner-sunshine as I can muster. It would be fair to say that I have made it my norm to overcompensate for my illness. By attempting to do more than most healthy people could ever hope to manage, I somehow feel less disabled. I spent the first three and a half decades of my life trying to convince everyone around me, as well as myself, that I was absolutely fine. When I was taking half-hourly morphine just to function, I was fine, thanks. When I weighed less than 5 stone, and it hurt even to drink water, I was fine, thanks. Even lying in a hospital bed, following emergency surgery, my answer for visitors was always: ‘I’m fine, thanks.’
This has simply become my instinctive mode of survival. Sometimes it takes more effort than at other times, but it is just the way I have learnt to get by. If I tell the world that I’m fine, thanks, I am able to convince myself of that fact too. As I see it, dwelling on the negatives would benefit nobody, certainly not me or the people I love.
Mark it on the calendar
Between International Women’s Day and World IBD Day, and with excess time on my hands, my thoughts shift to the function of commemorative dates. While the former is a day of positivity and honour, an annual reminder dedicated to the difficulties of living with IBD appears slightly less of an overt cause for celebration.
Of course, the purpose of the day, is to educate people of the realities of these hidden illnesses by drawing attention to (rather than celebrating) their existence. Every year on World IBD Day, organisations across the globe lead campaigns to help raise awareness and start conversations about life with Inflammatory Bowel Disease.
I always think it is fitting that the day falls on May 19th, my late paternal Grandma’s birthday. Also fitting, is the fact that the colour associated with Crohn’s and Colitis Awareness is purple, which happens to be mine (and my late Grandma’s) favourite hue. My Grandma was, without a doubt, one of the inspirational women who shaped, influenced and guided me in so many ways.
Although traditionally-minded and slightly old-fashioned in some respects, my Grandma was actually quite forward-thinking in others. Having experienced severe anxiety for most of her life, she had a greater depth of understanding of mental health and its fragility than most people of her generation. She was all in favour of good, honest, simple talking therapy, and believed that an open conversation could right most wrongs.
So, tell me about it…
This can be problematic for a number of reasons. All too often, for someone struggling with a chronic illness, the last thing we want to do, is talk about it. When asked: ‘How are you?’ it would never enter my head to tell someone which parts of my body hurt that day, or how much I may have struggled to eat, sleep or carry out the basic day-to-day tasks I still have on my list from 3 days ago. It is not about dishonesty or wanting to keep secrets, but rather the fact that, nine times out of ten, people simply don’t know how to respond when the answer is anything other than: ‘I’m fine, thanks.’
In December 2016, when my affectionately named naso-gastric feeding tube, Nelly, was put in place, I knew I was going to have to start being more open and honest. Unless I was prepared to look really stupid, that is. How could I answer: ‘I’m fine, thanks.’ with an NG tube in my nose? How could I dismiss my disease, when I was wearing it on my face for all the world to see?
It was then that my perspective changed, and I decided to begin this blog. I finally realised that there is a world of difference between grumbling and moaning, and talking constructively to help raise awareness and generate understanding of something which is needlessly taboo. Why should illness be unmentionable? More to the point, why should a person experiencing symptoms of an illness, feel as though they deserve to be outlawed or subject to disapproval and judgement?
There’s always a choice
We didn’t choose the condition. We didn’t choose the way it affects us. What we can choose, though, is how to deal with it. Having Nelly, however frightening it was at first, gave me permission to be honest about how ill I was – initially with myself, then with others. Taking Nelly out meant I lost my crutch, in more ways than one. Suddenly, all my default settings were restored. I began giving the stock answer of: ‘I’m fine, thanks.’ to almost everyone who asked.
Maybe that is something I’ll always struggle to change – old habits and all that. These days, however, I find other ways to start the conversation. Through my blog, I write about the very real obstacles I face; I have made a documentary short; more importantly, I no longer pretend that Crohn’s is no big deal.
For many people with IBD, depression and anxiety are often in the background. I wonder if it is more than a coincidence that this week also marks Mental Health Awareness Week.
Living with illness, whether physical or mental, visible or hidden, can be an incredibly isolating burden to bear. With social distancing, quarantine and shielding such a key part of our lives right now, everyone is experiencing some level of isolation.
When I stop to think about how the world will look when we (eventually) come out the other side of this pandemic, I can’t help but dwell on the inevitable rise in an assortment of mental health issues.
With my optimistic head on, I would like to think that the world will be a more empathic place. I hold onto the hope that, having experienced isolation to some degree, people will be more considerate of those who face it daily. I am crossing my fingers that these virtual lines of regular communication remain open – between families, friends and strangers.
The truth is, we have no idea what the world will look like when the COVID19 clouds clear. It is safe to say, though, that these illnesses will still be rife. So let’s start the conversation, let’s share our thoughts, let’s be open about our feelings in whatever way we can, so that one day, the stigma might be lifted.
Returning to thoughts of inspirational women, I’m going to leave you with a poem. My Grandma, who would have been 100 tomorrow, wrote this poem in one of her collections. It seems a perfectly fitting end note right now. You see, no matter what hardships lie ahead, or how long the tunnel may seem, we have to have faith that there is a glimmer of light at the end of it.
Friday Night Dinner
by Joan Gordon
The parents look haggard,
their teenager bent in pain;
when she hurts, they hurt.
Their niece sits nearby
at twenty-four, hollow-eyed,
fighting her own demons.
Despite the waft of chicken soup,
Grandma has little appetite,
nostalgic for the days
when their ailments could be soothed
with a comic and a kiss.
Nicola, eyes agleam,
moves across to hug Gran,
whispers in her ear:
How’d you like to be a Great-Grandma?
Oh, Darling! Yes, yes, yes!
Smiles light up the room.
Gran wipes her eyes, raises her glass:
For what I am to receive, O Lord,
may I be truly thankful…