Building a Working Life That Fits How do you build a working life that is genuinely meaningful when your body might have other plans? Not a career that merely survives a diagnosis, but one that works with you, fits who you are, and still has space for the person you are becoming. I have been sitting with that question since 2005, when I was diagnosed with rheumatoid arthritis. I am a psychotherapist and leadership coach, and over the years I have sat alongside many people navigating the grief that can accompany a life-changing diagnosis. I have listened as people mourned the futures they imagined and struggled with changing identities. I also know something of that experience personally. RA has moved between the background and the foreground of my own working life over the years. Initially I made sense of my diagnosis through advocacy. I became involved with NRAS, contributing as a patient expert during NICE technology appraisals when access to biologic therapies was still limited, and latterly as a Board Member working to raise the profile of the charity and the condition itself. Advocacy gave me something that diagnosis had temporarily taken away: a sense of agency. Thanks to organisations like NRAS, and to the clinicians, researchers and healthcare professionals who have transformed treatment over the past twenty-five years, many more people with RA are now able to build careers that simply would not have been possible when I was first diagnosed. To explore what that looks like today, I spoke with four people living with RA whose careers could hardly be more different. Their stories reveal that while diagnosis may interrupt a career, it does not have to define it. When diagnosis interrupts the story A diagnosis of rheumatoid arthritis does more than change what your body can do. It interrupts the story you were in the middle of telling about yourself about your working life. You might have just qualified or finally secured your dream job. Perhaps you had mapped out exactly where your career was heading. Alongside navigating the practical realities of medication, appointments and fatigue along comes another question to answer. Who am I now? For Emma Jane, this interruption came suddenly. At 24 she was living what she describes as her dream, working in New York on HSBC’s Investment Banking graduate programme, when her body suddenly froze. Within days she had returned to the UK, been diagnosed with RA and been told that she might never work again: “At the time I did feel like my dreams were slipping through my fingers” Rachel’s disruption came more gradually. Newly qualified as a nursing associate and caring for her baby daughter, she initially assumed her pain was part of recovering from pregnancy. Instead, she found herself trying to establish her career while living with increasingly severe RA: “I’d not long qualified, and I just felt like all the things that I’d learnt, I’m not going to be able to do anymore” Sharon’s story began much earlier. Her father had rheumatoid arthritis, and this shaped decisions she made about her career right from the start, altering the path she imagined for herself as a landscape gardener long before she too developed the condition. Katrina, diagnosed at just one year old, has never known a working life without RA. Rather than grieving a previous identity, she has spent her career learning how to work alongside a condition that has always been present. Their circumstances differ, but one thing connects them all. None of them gave up on meaningful work. What changed was not their ambition, but the route they took to achieve it. Building a working life that fits One of the biggest lessons I have learnt, both personally and through my work with clients, is that building a career with a chronic health condition is less about finding the perfect job and more about finding a way of working that is sustainable over time. Of all the adjustments RA asks of you professionally, pacing is perhaps the most counterintuitive. Pacing is often understood as doing less but really it is about using the energy you have wisely. Living with RA can make it tempting to fall into a boom-and-bust cycle. On the days when you feel well, you try to catch up on everything you have missed. This can look like working longer hours, saying yes to extra social commitments and squeezing more into the day. The problem with this strategy is that too often the following day the body remind you there is a cost. Rachel experienced this first-hand. Working on a busy trauma and orthopaedic ward, she realised that the physical demands of the role were making her illness worse. The idea of leaving a role she had trained for and loved was difficult. Yet she recognised early on that if she wanted a long career in nursing, she needed to build one she could maintain. So, she opted to reduce her hours and make a move into dermatology, allowing space for rest and recovery along with caring for her daughter whilst continuing to pursue her passion. What struck me overall was that Rachel never talked about giving up her career. Instead, she talked about finding a way of working with her RA rather than against it. That distinction matters. Many people spend time trying to recreate the life they had before diagnosis. Yet continuing to work with RA often involves redesigning a working life rather than trying to preserve it exactly as it was. The question becomes less “How can I get through today?” and more, “What will allow me to keep doing work that matters to me next month, next year and beyond?” Pacing isn’t only about managing energy. It also asks us to confront something more uncomfortable. How we think about ourselves. All too often, there can be a temptation to compensate for having a chronic health condition by working harder. You stay late, take on one more task or avoid asking for help for fear of being seen as less capable. Katrina recognised this in herself. Diagnosed at just one year old, she has never known working life without RA. Even so, she spent years trying to prove that it would not hold her back: “When you don’t label yourself disabled or not capable of doing stuff, you give 110% while everyone else is giving 80% trying to prove you’re just as good as everyone else” I suspect many will recognise that feeling. Pacing requires letting go of the need to prove yourself and thinking about working differently, not necessarily working less. It is working in a way that allows you to keep contributing over the long term. Listening to your body is not the opposite of ambition. It is often what makes ambition possible. There is another aspect of living and working with RA that warrants attention. It isn’t only physical energy that needs managing. Chronic pain, poor sleep and the uncertainty of flare-ups can quietly erode emotional resources too. When work continues at the same pace, it becomes easy to turn blame inwards rather than recognise that your circumstances have changed. Perhaps this is where self-compassion matters most. Not because it lowers expectations, but because it is a reminder that adapting to a chronic health condition is an ongoing process, not a one-off adjustment. Responding to yourself with the same understanding you would offer someone else makes it easier to build a working life that is not only meaningful but sustainable. You do not build a career alone Building a sustainable career isn’t just about understanding your limits or capacity. Work is a fundamentally relational experience, so managers, colleagues, occupational health and the wider organisation all have a part to play. Sharon experienced both sides of this. At one stage in her career, she stopped talking openly about how much she was struggling because she no longer felt safe doing so. Later, when applying for a role in the Civil Service, she chose to disclose her condition from the outset. As a result, she gained a sense of belonging and importantly, permission, as her condition changed or evolved, to adjust her working arrangements accordingly: “When I went for the interview with the Civil Service… I thought, I’m going to be really brave. Whoever I applied to, I’m going to tell them. And if there’s any doubt, I don’t want to work for them anyway.” One of the questions I am often asked by clients recently diagnosed with a health condition is ‘should I disclose my illness or not?’ Disclosure is rarely straightforward and there is no single right answer. For some people it feels necessary from the beginning. Others choose to wait until trust has developed or a particular moment in time in managing their condition. What matters most is recognising that asking for reasonable adjustments is not asking for special treatment. They enable people do their best work, not lower expectations. Rachel’s experience of sharing with her manager and Occupational Health was transformative when she had been very unwell. A phased return, flexible hours, regular breaks and practical workplace adjustments weren’t special treatment. They allow her to continue to work in a profession she loves: “Look, I have this condition. This is how it affects me, and sort of not to be ashamed to say this is what I need, because otherwise you’re just probably going to fail. So, to set yourself up for success, you just need to say, look, this is how it has to be, basically.” Emma Jane described gradually learning to explain her condition to new managers and colleagues. Rather than trying to hide her RA, she became more confident in advocating for what she needed: “Whenever I started a new job…I would sit down, tell them, this is what I’m facing, this is what I asked from you, and explaining that there will be some days where I’ll come into the office wearing Ugg boots with my suit trousers, and if I go into the meeting, I will change my shoes to a pair of flat shoes…but while I’m at my desk…please can I be allowed to wear Ugg boots, and it’s silly things like that, because it meant that I could actually walk into the office, I could walk around the office, nobody really noticed it. Nobody noticed it at all.” Advocating for yourself rarely comes naturally. Like Rachel, Emma Jane, Sharon and Katrina, it is something that can be developed over time. Learning to explain what it means to have an invisible illness, asking for reasonable adjustments, and having honest conversations with managers and colleagues is part of building a career, not separate from it. Redefining success Both my conversations and my clinical work suggest that diagnosis rarely diminishes ambition, instead it often brings greater clarity about what success means. Although Emma Jane stepped away from the investment banking career she had imagined at 24, she still built a varied and fulfilling corporate career for more than 20 years. More recently she has retrained as a nutritional therapist, a clear indication that her ambition has not been curtailed by her diagnosis: “I’m studying again, something very different, but really fulfilling, and I’m doing it because…as I get older, I need the flexibility more…this enables me to control my working day. I can, if I’m having a flare, I can sort of delay things, and I can look after myself.” Rachel is clear that success means remaining in the profession she loves, even if that required changing direction: “My goal now is to become a nurse specialist in dermatology…I’m deciding whether I want to do a master’s in the future…and at the minute I think I’m on track for a first in my degree, which I’m very happy about…yes I’m tired but I’m quite proud of myself and I think, that’s actually quite good.” Sharon has found an organisation where she feels valued and supported. And can contribute without pretending she is coping when she isn’t. Now in her 60s and loving what she is doing, she has no intention of giving that up. For Katrina, success has become about having valuable family time and working for herself on her own terms. What struck me about these four very different stories is not that anyone lowered their sights. It is that each of them, in their own time and in their own way, arrived at a version of success that was genuinely theirs rather than one they had absorbed from elsewhere. That is harder than it sounds. The cultural narrative about career is built around continuity: linear progression, increasing seniority, and sustained momentum. It leaves little space for flares, recovery days, or changing direction. It is perhaps why in my clinical work I have found that the question people wrestle with most after diagnosis is rarely a practical one. It is an identity question. Who am I if I am not the person who was going to do that? In my experience, the people who find a way forward are rarely those trying hardest to recreate the career they imagined before diagnosis. They are the people who gradually begin shaping a working life around the reality of their circumstances. That is not resignation. It is a different kind of ambition. I asked each of the four people I spoke to what they would want someone newly diagnosed with RA to know about building a career that works for them: “Tell your management. Know your limits. And get to acceptance. When you get there you go: okay, I have it. It is not the end of the world. What can I do about it now?” – Rachel “The world is still your oyster. Don’t panic. Focus on getting stable, and great opportunities will come your way.” – Emma Jane “Don’t rush it. It is more of a marathon than a sprint. Live hand in glove with your illness. Don’t hide it. Speak about it, educate people.” – Sharon “It is not a disability, it is a different ability. Your health is your most precious thing. You need to be your own greatest advocate.” – Katrina Diagnosis changes the story. It does not have to end it. Jean Burke, Psychotherapist and Leadership Coach, www.jeanburke.net