So far in 2021 over a thousand unpaid carers have registered with us at Signpost for support. One of these carers was Morgan who works as a PhD researcher, whilst also caring for his partner Emily. Morgan has kindly shared his story about their relationship, their daily struggles and his hopes for a post-pandemic world.
So many of our relationships involve care. Families, partners, friends, and communities care for each other in ways that we might not immediately think of as ‘caring’ – through cooking and cleaning, through advice and encouragement, through conversation and intimacy.
These everyday kinds of care give us the strength to endure circumstances where we might feel isolated, undervalued, and alienated, both at work and in other areas of life. When I first met my partner, Emily, I was about to leave home for the first time to go to university. Moving to a totally new city, to live with people who I’d never met in a competitive academic environment was difficult, and there were times when I thought that it wasn’t for me, that I couldn’t cope with university life and should give up. Emily’s care, our nightly phone calls and fortnightly visits, got me through those times.
Later in our relationship, I found myself working in jobs that were unfulfilling, poorly paid, and exhausting. Being able to come back to the home that Emily and I were making together, to share stories of work over a meal and listen to stories from someone else’s day, made it bearable.
It was during this same time that Emily’s health started to deteriorate. Chronic illness is never straightforward – Emily had always had symptoms like fatigue and seemingly random pain – but that pain became increasingly intense. Emily started to struggle with things that we previously took for granted and became mostly housebound. At first doctors diagnosed Emily with fibromyalgia, but that diagnosis has changed over time and investigations are ongoing into various comorbidities. It was only through saving to buy a powerchair that things started to improve, helping Emily conserve enough energy to get through the days and, on good days, be able to leave the house.
The decline in Emily’s conditions has changed our relationship in specific ways, like in the balance of who does what kind of housework. But fundamentally, our relationship is just as it always was – one of mutual care and love, of supporting each other through challenges, sharing times of joy, and adapting to changes together.
A particularly difficult change for both of us has been adjusting to a world that actively discriminates against disabled people. We found ourselves facing a new and difficult set of challenges – being excluded from buildings by the lack of lifts or ramps, arguing with people who park their cars on dropped curbs, learning to navigate a hostile and punitive benefits systems which starts from the assumptions that you’re exaggerating your disability, and dealing with unsympathetic and ill-informed medical professionals who often dismiss chronic illness as psychological. While we have adapted well to Emily’s changing needs in our home lives, these kinds of problems are constantly being forced on us from outside. One of the most difficult aspects of my caring responsibilities is supporting Emily in dealing with the endless admin work that comes with disability – the detailed forms that need to be filled in to receive basic services, the difficult phone calls back and forth with GPs, and the intrusive and anxiety-inducing assessments for benefits like PIP. Again, it’s only through supporting each other that both Emily and I are able to deal with this.
In some ways, I’m lucky that I can work flexibly. As a PhD researcher, I don’t have strictly fixed hours or regular targets that I have to meet. This means that I can take time out of my day when Emily needs me. At the same time though, the flexibility of a PhD can have downsides: the expectation that I manage my own time independently means that there’s a lack of recognition of how my caring responsibilities impact my work. I am expected to conduct my research in the same timeframes as everyone else, with the same outcomes, despite having very different responsibilities at home compared to others. While PhD researchers are often treated as workers by universities, being in full-time education means that I can’t claim Carer’s Allowance, denying us a key source of income which could help us afford the adaptations that we need in our home.
I worry about the future, after the PhD, where I may have to take up less flexible work and find ways to balance that with care.
Work doesn’t do enough to take account of our need for care, even though employers rely on it – they rely on everyone being able to show up to work every day refreshed, rested, and looked after, physically and emotionally well enough to be able to do what they expect of us. The pandemic has done a lot to draw people’s attention to this, to make us all more conscious of our collective health and wellbeing. But my concern is, that in the rush to get back to ‘normal’, we learn nothing from the last year and continue to ignore the significance of care as something which we all rely on, pushing it back to the invisible and undervalued background of home-life, putting work first at all costs.
For support combining work and care, visit our working carers pages.