Dr Sally Hemming is a psychologist and EY’s Health and Wellbeing Lead. But she is also someone who knows what it’s like to live with a long-term chronic health-condition, which makes her passionate about creating a workplace that promotes wellbeing for all, and especially those who would benefit from reasonable adjustments (the topic she’s speaking about at The Watercooler in April). She’s also undertaken research, as part of a PHD and ongoing, on the topic of long-term conditions at work with her findings published in professional and scientific literature.
Usually private by nature, we were very privileged in this interview to talk to her about what it’s like to live with her condition and how it influences how she does her job.
What is it that makes you so passionate about managing long-term health conditions in the workplace?
It’s personal.
I received a life-changing diagnosis in my twenties and at the time I was questioned by clinicians and people “should you be working?”.
The diagnosis meant that something terrifying could happen to me at any moment, but then I was told “go off and live your life”.
If I’m honest, I was cross about it and life changed in a moment.
And I recognise that I talk about it in quite a ‘dark’ way to this day. My reality is that I’m not a ‘marathon runner’ for the cause, and I’ll never be. I will never say my diagnosis is the ‘most amazing thing’ that has ever happened to me because, if I could turn the clock back, I would.
What has it taught you about how we talk about longterm health conditions in the workplace?
It’s taught me that there’s a social narrative around health which is unhelpful. The predominant narrative implies that if you have a longterm condition then you’re different, broken, sick, less than. You’re a risk. You’re unreliable.
The focus often seems to be about ‘fixing’ people with health conditions (rather than fixing the system around them) so they can keep working.
Most people I’ve spoken to with a long-term condition, and I include myself here, want to work. I think that work plays such an important role too because the reality is, at least for me, you may not be able to work at all one day, and you don’t know necessarily if and when that time will come.
I also learnt that it’s wrong to think about workers with long-term health conditions as one ‘type’ of worker because there is such a vast array of conditions.
Some people have had a condition for a long time and it’s fairly stable, others are newly diagnosed and learning to self-manage symptoms. Others might have a condition(s) that does or does not interfere with work much. Yet other people’s conditions may be fine one moment and relapse in the next. Moreover, some conditions degenerate and worsen over time.
What’s it like, living with that much uncertainty?
It’s scary. I have a family. I have bills to pay. And I feel like I’m always planning for a scenario of not being able to work. I need to work now to save for when I might not be able to anymore, even though that might not happen. It’s not alot of fun to live with such ambiguity and often challenges identity.
What else have you found unhelpful in the way people are treated when they have a chronic illness at work?
It can be unhelpful when the workplace expects someone with a chronic illness to have all the answers and control, when they can’t possibly, and especially if the workplace pushes for certainty.
For instance, I can’t be 100% sure that I’ll able to work next Monday. But I hope to. Is there a chance I won’t be able to? Sure. Is there a chance that I might not be able to get out of bed, but also a chance I will be just fine? All scenarios could be true of all of us, some of us just have the heads up on a greater possiblity.
Anything else you find unhelpful in the way that people treat you, on account of your illness?
I don’t want people to tilt their headsat me, or say ‘sorry’ they knew someone with that and, therefore, they know how it is for me, or congratulate me on my ‘battle’ when, in fact, I’m always losing. So, I often don’t want to talk about my health situation and prefer to discuss it only when I really need to.
What would you most like people reading this to understand about what it’s like living with a chronic illness?
I would like people to know that it’s a tough gig. Statistically, people with chronic conditions are far more likely to also have mental health challenges. And I think there is a real lack of appreciation that living with a long-term illness is like a second job, that runs alongside your career, caring responsibilities and everything else.
It’s non-stop.
You’re not just thinking that you’ve got meeting today, you might also be thinking ‘have I taken my meds on time?’or ‘do I need to phone that consultant who said there’s a drug trial that could be really good for me?’.
The mental load that affected workers carry is huge. Sometimes it’s called ‘cognitive fatigue’. I think of it as the bag of worries, responsibilties and insecurities you’re constantly carrying around with you. This thinking can be frightening and unsettling and draining. It’s important that employers appreciate this extra work and that, on some days, what they’re asking – alongside this – can be challenging for a person to handle.
You’ve spoken to a lot of people with long-term health conditions for research you’ve done on this topic. What is their experience of how the workplace handles their situations?
People’s experiences varied and some were well supported. Hearing people’s stories especially was a privilege but also saddening. Some people perpetuated stigmas about themselves and their health due to work factors, and a lack of openness and confidence.
What could companies do better?
Be honest and up front about long-term conditions and open to learning about them. Where possible, make it easier for affected people to adjust and empower them to do things for themselves.
I know more about my condition and its affects than anyone and have more real, lived experience than a medical team. Workers with conditions can benefit from being trusted in their lived experience and in knowing what is going to help. We are the expert patients, like mini–clinicians ourselves.
Frankly, no yoga lesson will help me navigate through or out of my health condition. What could be useful is my GP and consultant talking about work, its role in my life and the disease journey, and to each other. Practically, working flexibly and to not be over tired help – the latter two are obviously not specific just to those with long-term conditions.
We’ve written a lot about the ‘rise of Occupational Health’ recently. What would you like to see more of from OH?
OH can help people navigate workplace adjustments better and I would like to see OH have more of a role with broader psychosocial support and vocational rehabilitation, which is often offered through income protection providers.
We’ve also written a lot about flexible working. What is your view of this in relation to long-term health conditions?
My view on this is that if you had to make one adjustment, flexible working would be it.
The Covid-19 pandemic demonstrated very clearly that flexible working is possible in many industries, and this could be the obstacle stopping someone with a long-term condition working at all.
How do you bring all this experience to bear on your role at EY?
My role at EY is broad in terms of health and wellbeing. I bring relevant personal, professional and health experiences and have a scientific understanding and knowledge about psychosocial work factors, which helps.
I’ve also worked in employee relations, which helps relationships and support access.
My priority focus is our wellbeing culture, mental health and wellbeing advocacy. What I’m most interested in is getting beyond gimmicks and under the skin of working conditions and their health and wellbeing effects.
You’ve also talked about the power of purpose. Can you tell me more about that?
Purpose helps people navigate tough stuff.
For me personally, my PHD gave me an enduring purpose and was an opportunity to make a real difference to working people. As I’ve managed to keep involved with academia, alongside and complementary to my day job, this maintains a sense of purpose that drives me to make things better.
Come and listen to Sally speak at The Watercooler Event
