I’m not sure these are #Weeknotes, more like #Lifenotes. I actually wrote most of this whilst in hospital over Christmas & New Year but felt too nervous and tired to post (so excuse some tense-flipping at the end).
Huge respect and thanks to Cat Macaulay and Emily Bazalgette for being brave enough to openly share their experiences of chronic health, life and work recently*. Their posts in the past week or two (paired with being pissed off at the whole Orkambi debacle and generally feeling rough), have given me the push and motivation I needed to start sharing some of this stuff more openly.
Mainly because writing makes me feel better about living with Cystic Fibrosis, but also because some of it might be helpful to other people.
Winter is not coming
Daylight saving started this week!!! This winter has been longggg… In GoT terms, Winter Is Not Coming. It’s been, and now needs to frankly F off. The past 6 months have been tough on my health, both physically and emotionally. And I’m excited to shake off the bugs, the infections, the fatigue and revel in longer and lighter days.
I’m grateful for the time I’ve had to reflect on my health this winter though. In particular, my relationship with independence. For a long time (too long), I’ve treated my health like a solo sport, and held independence with CF up like a badge of honour.
Through a mixture of my own personality traits (e.g. stubbornness and pride) and some archaic narratives that are baked into our health system (e.g. perceived masculinity and health); I’ve not focused enough on the importance of interdependence, leaning on others and asking for help when I need it; often at the detriment of my own health.
Health as a team sport
Chronic health is a team sport, and across the system (formal and informal), we need to make it easier for people to ask for help, lean on others and form their own supportive health tribes. We need to make it easier to live and work with chronic disease; supporting one another to feel less like ‘we have to do this on our own’.
I wrote this story of being a kid with CF, not as a tale of being brave or courageous, but to make a point about how quickly I sought out independence with my health. It’s probably the first memory I have of trying to ‘do this on my own’, and feeling like I had something to prove.
It was approaching bedtime, the street lights were going out and I was sat on the bed. The TV was on, but I don’t remember what was playing. I’d jarred the door open with a plastic chair from the other side of the room, and sat on the end of the bed so that I had a straight view into the hall. I cried for a few minutes, and then sat there quietly listening to the noises of whirring machines and voices of people I didn’t recognise. I remember thinking, ‘so long as I can hear someone, I’ll be ok’. Next to the bed was a drawing of me and my sister looking like Big Bird from Sesame Street.
Sat on the bed, I’d become frozen with fear. When I look back, it was my first memory of experiencing the loneliness that can come with living with chronic disease — a deep sense of feeling alone despite being surrounded by so many people who want and are there to support you.
I must have been about 7, and it was the first time I was staying in a hospital on my own. A few days before I’d begged my parents and my health team that it was something I wanted to do. I remember feeling elated when they agreed, and had the colourful naivety of a wide-eyed 7-year old. I felt full of pride to show the world a braver 7-year old me, a big kid that could ‘handle it’.
But sat on my bed, it didn’t feel like the big adventure I remember imagining it would. I didn’t feel like some brave-badass-pirate-explorer I thought I might. Nor, did I feel like the ‘big kid’ that I thought living with Cystic Fibrosis needed me to be. I just felt scared and lonely — like any other kid staying on their own in hospital.
A few minutes later there was a knock on the open door. A nurse walked in with a mug of hot chocolate and sat on the end of my bed. She’d probably heard me crying. She asked if I was ok, and if I wanted to sit and drink hot chocolate outside by her desk whilst she did her work. Wiping some tears away, I nodded and she said [or to the effect of]: “thanks, I could do with someone to talk to, working nights can be a bit lonely for me too.” I don’t remember what we spoke about, probably some 90’s TV kids’ stuff, but instantly I felt less alone. I felt much more like the brave-badass-pirate-explorer that I thought I might.
After I had finished my hot chocolate, and shared some [let’s assume] epic tales of Teletubbies and TinTin, I went back to bed. I sat up listening to the beeping of machines and kids crying into the night. I could hear the nurse telling someone how brave it was that I wanted to stay the night on my own. I was elated. I was independent.
That night I feel asleep feeling like that brave-badass-pirate-explorer. Looking back, I’d started a long and difficult journey of understanding independence and life with chronic disease. One that I’m still trying to figure out 21 years later.
From independence to interdependence
Over the past 28 years, I’ve had to learn and re-learn how to live alongside CF, and from my teens until now, how to be independent with it. It’s been a daily lesson I’ve struggled with. At 15, shifting from a well-rehearsed, daily routine of treatment choreographed by other people, to going solo and taking the driving seat myself; like Robbie Williams breaking from Take That. Over the years, I’ve been doggedly focused on proving that despite it, I can live a full, fun and colourful life, and that I can ‘handle it’. I’ve treated independence — and ‘doing this myself’ — like a badge of honour.
Unsurprisingly, at times it’s been at the detriment to my physical and mental health, and I’ve often had to fall back on those around me to pick me up again — from my family and friends to those I work with (people I’m eternally grateful to have around me). Along the way I’ve lost count of how many times I’ve felt ashamed and embarrassed about it; that these moments are somehow exposing that I’m not independent at all, and I can’t ‘handle it’. That craving a full life, comes across irresponsible. Which seems silly when I write it down. Chronic disease or not, it’s a feeling we’ve all had at some point in our lives, whether with health, at work or in relationships. Asking for help when the chips are down is bloody hard and takes real courage.
When it comes to chronic health, independence is important. We need to learn to ‘look after ourselves’, and take responsibility for our health. Undoubtedly it’s something we should strive for and be proud of. It’s empowering when we feel like we’ve got it, and disempowering when it gets taken away. But health is a team sport not a solo one. It’s a mentality that I’m learning the hard way, despite it seeming so obvious.
Recently with some help from my amazing coach and friend Shelley, I’ve been trying to shift my mindset from focusing on independence, and ‘this is something ‘I’ have’, to an attitude of interdependence, and ‘this is something ‘we’ have’. It’s a less traditionally western way of looking at it I suppose, but acknowledges the often invisible ‘we’ in chronic disease — like our family or colleagues and the impact a chronic condition has on them too (and visa versa). I’ve been guilty for a while of neglecting how it affects them, and lacking some empathy in what it feels like to be on the other side. I’m not particularly proud of that, but want to try and change it this year.
At work it means leading with health, rather than in spite of it. I’ve got an incredibly long way to go, but starting to think through how I can use my experiences of living with CF as a positive leadership trait, rather than something to hide away — and ‘deal with’ on my own outside of work.
It means finding better ways to communicate with others about my health; being more honest and open about it; bringing others into the decisions I make surrounding it; and acknowledging that those around me might be impacted by it too. It’s really hard, especially working in a fast-paced and ever changing environment; but it feels like a much healthier and powerful way of leading — showing vulnerability, openness, shifting away from perfectionism and realising that sometimes just showing up is enough.
I’ll share more about what I mean by ‘leading with health’ as I’m figuring it out; but for now hopefully just writing some of these thoughts down is a good starting point.
Fast forward 21 years, and I’m back in a hospital room. The room is warm and feels like fake summer. I’ve got the window inched open and outside the sky looks like a half-finished Jackson Pollock, littered with colourful fireworks. It’s 9PM on New Years Eve and unlike most years I’m getting ready for bed rather than the usual heading out. It’ll be the first New Year’s Eve I’ve spent on my own, but unlike the 7-year old me, I don’t feel alone. As always I’ve been surrounded by people that have stepped in to make me better, to cheerlead me from afar and to give me a hug when I’ve needed it.
Health is a team sport, and independence is not a badge of honour. Building a supportive tribe, learning to lean on those around you and asking for help when you need it; are where we should be focusing. Independence is important, but interdependence will save your life. I’m far from cracking it, but I’m going to keep trying through 2019.