How Can Patient Advocacy Ever Succeed When Doctors Are Running on Empty?
Recently, at The Informed Perspective, we had a fascinating and deeply moving conversation about patient advocacy, a subject very close to my heart, especially having fought with chronic pain for over five years. I’ve had my share of encounters with physicians who seemed to lack the time, patience, or understanding I desperately needed. I have even been reduced to tears by a doctor’s lack of empathy and disregard. Such experiences left me feeling disillusioned and losing confidence in the medical profession. Ben Taylor, the Founder/Owner of The Chronic Pain Trainer™, and a former chronic pain sufferer and health professional knows this feeling all too well. He recalls being told by a doctor, “you don’t look like you’re in pain.” While these experiences are deeply personal, they also highlight the broader dynamics between patients and physicians that we need to understand to improve care.
Growing up, I believed doctors knew best. Now, I no longer see them as all-knowing, and maybe that’s a good thing. The more human we see physicians, the better our relationship can become. But that relationship also requires doctors to allow themselves to be human. They need to stop feeling proud or convinced that they always have the answers. In my case, no doctor to date has provided a solution, yet every new consultant I meet confidently tells me they know exactly what the problem is and that we will find a cure, only to admit, in the end, that they don’t. Every new appointment brings fresh hope, and then disappointment. So yes, at first, I have every reason to be sceptical about fighting the corner for doctors. And yet… there are always two sides (if not more!) to a story!
I’m not sure if you spotted it, but when I talked about my chronic pain, I used the word fought without even thinking. How often do we use words like fight, struggle, and battle when we talk about dealing with illness or a diagnosis? When it comes to health, the pain you’re going through, and the way it limits your everyday life, it’s no surprise the language feels so charged. Poor health stirs up a lot of emotion. When we’re unwell, it can be really hard to stay open-minded. Pain affects our feelings and makes it trickier to stay balanced and non-judgmental. Sometimes it’s mixed with resentment, a sense of unfairness about being ill, and all of that adds to the conflict: conflict with the world around us, with other people, and even with ourselves. It’s a reminder that how we frame our experiences also shapes how we connect with the doctors supporting us, language can build or block understanding.
Christine von Raesfeld, a lived experience expert and citizen scientist in precision medicine, rare disease research, and AI rights in healthcare, suggests that we need to “reframe the adversarial tone that dominates the discourse around healthcare.” She explains that “healing should be a collaboration, and doctors should not be warriors but helpful guides, enabling patients to be co-authors in their care journey.”
That idea of reframing is at the heart of what we try to do at The Informed Perspective. We’re always talking about informing perspectives, and this applies just as much here. When we hear the stories of patient advocates, those who’ve been through, or are still going through terrible ordeals, it’s easy to sympathise with their struggle. Many of us have faced health challenges ourselves, or we know that one day we likely will. It’s natural to identify with the patient’s experience.
But what about the doctor, the physician, or the carer? There’s often a bit of distance between patient and doctor. We see them as a profession, people in those revered white coats, and naturally, we expect answers from them. And maybe that’s part of the problem: the culture that’s developed where we expect foolproof solutions from our doctors. Yet it’s not just answers we expect. We also demand (and rightly deserve) empathy, compassion, and understanding. Still, all the patient advocacy in the world won’t get us very far if we don’t also look deeper and consider the perspectives of our physicians.
Taking a moment to reflect on all this, I couldn’t help but think back to the Covid crisis and how doctors, nurses, and carers just got on with the job, selflessly, day after day. We all applauded them then, promised pay rises and more support. But now, years later, have we forgotten just how much we rely on them? Have they truly been rewarded or recognised for their sacrifices? The same goes for teachers and educators, by the way. And what about paramedics and surgeons who face the most horrific situations every single day? Honestly, what would we do without them? There’s no denying these people deserve our admiration, choosing a calling that is all about service. Service that demands years of discipline, hard graft, nerves of steel, dedication, and resolve. Definitely something worth pausing to consider.
We see them as a profession, people in those revered white coats, and naturally, we expect answers from them. And maybe that’s part of the problem: the culture that’s developed where we expect foolproof solutions from our doctors.
In recent years, there have been numerous reports highlighting the alarmingly high rates of suicide among doctors. The impact of Covid has only made things worse, adding further strain to an already challenging profession. Interestingly, a report published last year in the British Medical Journal1 suggests that while suicide rates among doctors have recently decreased, they remain among the highest compared to other professional groups, particularly for women doctors, whose rates are still above that of female non-physicians.2,3 It’s important to bear in mind that underreporting and patchy data from many countries mean these figures might not tell the full story.
At the same time, other research paints a grim picture, indicating that as many as one in six doctors have seriously contemplated or even attempted suicide.4 Clearly, despite some signs of improvement, there is still a great deal of work to be done to support the wellbeing of those in the medical profession. It feels a bit ironic, doesn’t it? We’re entrusting our lives to people who, frankly, aren’t always being looked after themselves. What on earth are we thinking?
We’re entrusting our lives to people who, frankly, aren’t always being looked after themselves.
I was lucky enough to be put in touch with Kim Downey, founder of Stand Up (for) Doctors!, who recently published White Coats, Courageous Hearts.5 The book really shines a light on the struggles physicians face today. While most contributors are based in the US, the conversations are relevant wherever healthcare workers are under pressure. Kim has had the courage to go beyond the patient advocacy that began with her own health journey, recognising that real, positive change can only happen when doctors are brought into the conversation too. By giving them a platform, she’s highlighting their humanity and working to bridge the gap between patients and physicians with the hope of a brighter outcome for everyone.
So here I sit, thinking beyond my own personal disappointment in the medical profession, and starting to consider the challenges that doctors might be facing too. It’s easy to get wrapped up in your own experience, especially when you’re someone like me who’s been living with chronic pain for years. Patients in this position are in a very different boat to those who only pop into the GP once in a while or need help in an emergency. We’re often still searching for a diagnosis, still hoping for relief, sometimes after years of unanswered questions and still no solution.
“Work doesn’t finish after a face-to-face appointment with someone”
Ben Taylor
And when you’ve had appointment after appointment, consultant after consultant, it can be hard not to carry that history into every new encounter. It gets harder to connect. Harder to trust. So maybe it’s not just that doctors struggle to empathise; maybe we’re not always meeting them halfway either. And maybe acknowledging that is a good place to start. Because if what we truly want is better care and better outcomes, continuing to see doctors as the ineffective or heartless won’t get us very far. The reality is, we need them. Desperately. Which is why something has to shift. We need to start asking: what can we do to help doctors have the time, space and support to be more present, more empathetic, more holistic in their approach?
While my own experiences have shaped how I view patient care, stepping back to consider the systemic pressures and personal struggles that doctors face helps illuminate why empathy can sometimes falter. Doctors, too, need to feel safe enough to be vulnerable, honest, and human, only then can patients feel safe to do the same. These personal experiences intersect with the realities faced by doctors, whose own pressures shape how care is delivered. Understanding both sides is crucial.
Ben Taylor argues that the problem runs deeper than individual doctors or patients; it’s systemic, rooted in “capitalist and societal structures…where profits are the most important thing regardless of patient and client outcomes.” Time constraints imposed by healthcare systems often prevent professionals from providing the care they know patients need. It’s not just the length of appointments that matters, but the number of sessions patients can access. In Australia, for example, the Chronic Disease Management (CDM) Plan allows only five subsidised allied health visits per year. While “a well-intentioned initiative in theory,” Taylor notes that it “often falls flat in practice,” making sustainable improvement difficult and leaving both patients and practitioners frustrated.
As he puts it, “the issue isn’t just about the time within a visit, but even the number of visits patients can access in the first place.” He adds, “work doesn’t finish after a face-to-face appointment with someone,” emphasising that doctors and health professionals need more time both with, and in between, patients. He shares the burden of compassion fatigue which he too has felt with the weight of carrying patients’ stories and struggles.
Taylor also stresses that “healthcare is a two-way street.” Patients, he explains, while “not always able to articulate it, know what they are feeling and going through better than anyone else on the planet.” Just as a doctor shouldn’t expect a patient to know the best course of action, a patient shouldn’t expect a doctor, on their own, to know exactly what will help with a complex health issue, and that’s okay. “Nobody has, or will ever know, everything.” The solution he says, lies in systemic reform: giving healthcare professionals more time and support, improving education on chronic pain and patient-centred communication, and fostering supportive communities and networks that benefit both patients and practitioners.
Todd R. Otten, a physician who shares his story in Kim’s book, alludes to the ‘lack of empathy’ that burnt-out physicians might be prone to, and this is exactly my own experience. As a patient, when you are at your lowest and potentially in a dark place, this is exactly the time when you need the opposite. I would go as far as to say my experience was almost inhumane, leaving me feeling quite traumatised and belittled. Isn’t it the patient connection that drives someone to become a doctor in the first place?
From what I have read, there is definitely a culture amongst physicians of having to prove your worth and not admit mistakes, and of course, with the advent of social media, the fear is even greater of being exposed. Where many professions have made progress, potentially the medical profession has not caught up and the old-school hierarchy still rules. Paediatrician Joe Sherman explains, “the weight of the physician identity is immense and it’s one we (as doctors) often wear without questioning.” Returning to the metaphor of struggle mentioned earlier, Sherman highlights the powerful reality that “these metaphors reinforce a narrative of the physician as a warrior,” one who is never able to stop fighting. Nicole Solomos, a Sports Medicine Physician, shares there is “invisible pressure to prove competence.” She alludes to bullying, gaslighting, harassment, public humiliation, racism and more amongst doctors and the need for systemic change. Whilst they enter the profession to help others in a kind of calling, when do they forget to treat each other and themselves with the same compassion and kindness?
“The weight of the physician identity is immense and it’s one we (as doctors) often wear without questioning.”
Paediatrician Joe Sherman
We have to remind ourselves that doctors have to juggle work and private lives, families and commitments too. Their lives do not stop with the last patient of the day. Alae Kawam, a surgical pathologist, explains that doctors, after years of disciplined study and practice, need those connections outside of work just as much, if not more, than others: “medicine asks us to give so much of ourselves, and we do, but somewhere along the way, we stop being people first…. We attach our entire identity to our role in the system, and that's not wellness, that’s survival.”
Dr Tamara Beckford explains: “You’re expected to absorb the grief, the fear, the frustration of everyone around you and still function.” As a physician, she experienced this firsthand, and hearing stories like hers has made me reflect more deeply. Perhaps we as patients sometimes hold unrealistically high expectations and lose empathy when we don’t get the answers we want, but maybe doctors, too, first need to learn to be kind to themselves before they can fully extend care to others.
Michael Hersh, Founder & CEO of Better Physician Life Coaching, advises that doctors reconnect with themselves and reflect on what brought them to medicine in the first place. Tamara Beckford adds that doctors need community and mentors, because “confidence grows in community,” and she encourages them to find something that defines them outside of their work. Dr Todd Otten suggests that doctors need more self-awareness; they need to check in with themselves and ask whether they are really okay. What’s more, when doctors are struggling, they must have access to meaningful support, whether through counselling, coaching, peer groups, or simply spaces where they can talk openly with colleagues. These opportunities to share, reflect, and decompress are essential.
Shaan Sahota, both a playwright and a doctor, recently spoke on BBC Women’s Hour about the importance of using “a very different part of [her] brain… to think about philosophical questions, such as fairness, justice, free will—the things that make life worth living, that arise from medicine,” and the need for “a place to unpack it all.” Her words remind us that doctors, too, need time and space to process the deeper, more human layers of their work.
Stephen Lewellis, a dermatologist, highlights the importance of doctors sharing their own stories and creating the space to do so.
Building on this, Stephen Lewellis, a dermatologist, highlights the importance of doctors sharing their own stories and creating the space to do so. Without this, he warns, “we treat signs and symptoms, not people… and miss what’s really broken.”
If we are to fix the system and the deep-rooted culture of generations, then we need to start by listening to what our doctors need, and this is surely not just a pay rise? Yes, a higher salary (we can currently see this playing out in the UK with the British Medical Association demanding a 29.2% increase to restore pay levels to 2008 real-terms values) will help (and is sorely needed), but this alone is not enough. There must be change in hours worked, support available, communities around them, and funding to encourage more young people into medicine. Taylor argues that part of the solution lies in better education for doctors, particularly in understanding chronic pain, patient-centered communication, and the psychological dimensions of illness. Initiatives such as the International Association for the Study of Pain (IASP) provide valuable resources to improve medical training and foster greater empathy, helping physicians better support their patients while also protecting their own wellbeing.
As mentioned earlier we also need to reconsider how we, as patients, interact with and treat our doctors. The relationship is a two-way street. If we approach doctors with patience, understanding, and respect, recognising their humanity and the immense pressures they face, it can only improve the care we receive. This isn’t about excusing shortcomings but about fostering a culture of mutual empathy and collaboration. It might not always work but it might be a start.
As Alec Kassin, Certified Chronic Pain Coach for Athletes and Co-Founder of Pain Free Comeback, highlights, patients themselves play a key role in this dynamic: “We’re often taught that we need a pill, a procedure, or a practitioner to fix us. This does two things – it leaves us feeling broken and powerless as patients, and it puts doctors on a pedestal, creating immense pressure for them to deliver. If we can instead see doctors as part of our team, not to ‘fix’ us but to help us uncover our own answers, we gain agency in our recovery and make it easier for them to help us.” This approach empowers patients while also easing pressure on doctors, creating the kind of collaborative care we all need.
Christine, a patient advocate herself, points out that advocacy groups supporting both physicians and patients don’t have to be “reactive but proactive and collaborative.” Initiatives such as The EveryLife Foundation and Rare Disease Legislative Advocates RDLA, The Schwartz Center, and The James Lindt Institute are already making a difference. They work on “advocating for policies like prior authorisation reform and the Safe Step Act, that have helped lessen administrative barriers that contribute to clinician burnout and delayed care.” By bringing patient and physician voices straight into policy conversations, these initiatives help build “more collaborative, efficient and compassionate healthcare systems.”
There is ample room for pursuing further structural reforms that reduce the burden on doctors while enhancing patient care. Examples include extending access to tele-health services, simplifying electronic health records and documentation, creating collaborative care models in which patients, doctors, nurses, and social workers co-manage care, formally involving patient advocacy groups in hospital committees or policy consultations, and establishing wellness programmes for physicians and carers. As Christine notes, “Burnout isn’t just a personal crisis; it’s a systems-level failure. To truly support clinicians, we need to redesign the structures that shape care delivery, and patient advocates have a powerful role to play in that transformation.”
As we have discussed the future of healthcare depends on building real partnerships between patients and doctors. Advocacy is vital, but it cannot succeed in isolation; patients need doctors who are present, supported, and empowered, and doctors need patients who engage with empathy, respect, and understanding. By breaking down barriers, listening to one another, and creating spaces for honest dialogue, we can foster a healthcare culture that is collaborative, compassionate, and effective. This means supporting those reforms that reduce administrative burdens, extend access to care, and create structures where patients, physicians, nurses, and carers work together as a team. It also means recognising that doctors are human, with limits, emotions, and the need for their own wellbeing.
When we approach healthcare as a shared journey rather than a battleground, we open the door to better outcomes for everyone, patients who feel heard and empowered, and physicians who can provide care without fear or exhaustion. The change starts with each of us: So get involved, join hospital committees, contribute to policy discussions, support advocacy initiatives, and speak up about what works and what doesn’t. Every conversation, every small act of understanding, every moment of listening adds up.
Only by rallying together, physicians and patients side by side, can we create a system where healthcare is not just about treating illness, but about nurturing humanity, trust, and connection across every level of care. The health of our communities, and the wellbeing of those who care for us, will benefit from it.
Contributors
Alec Kassin is the Injured Athlete’s Comeback Coach and Co-Founder of Pain Free Comeback. A former semi-pro cyclist and ex-LinkedIn Manager, Alec combines his personal experience overcoming career-threatening injuries with years of coaching expertise to help athletes move pain-free, regain confidence, and make a full return to their sport. He is also a best-selling contributing author and international speaker, sharing his insights on recovery, resilience, and athlete empowerment worldwide.
Christine Von Raesfeld is a lived experience expert and citizen scientist focused on precision medicine, rare disease research, and AI rights in healthcare. She is especially renowned for her leadership in the rare and chronic disease community. She collaborates with organizations like the NIH, CNS Summit, and Board Member of The Light Collective to ensure patient voices guide research, policy, and technology. A co-author of the first patient-led framework for AI rights in healthcare, Christine promotes ethical data use and patient autonomy. She’s also a published author and frequent speaker on patient empowerment, data equity, and healthcare innovation.
Ben Taylor is the Founder/Owner of The Chronic Pain Trainer™, and is a former chronic pain sufferer, and health professional (Strength & Conditioning Coach, Sports Trainer, Personal Trainer). Whilst he can work with healthy populations, he has a special interest in helping people with chronic pain, illnesses, injuries, conditions, and disabilities.
Images courtesy of Freepix.
References
1Zimmermann, C., Strohmaier, S., Herkner, H., Niederkrotenthaler, T. and Schernhammer, E., 2024. Suicide rates among physicians compared with the general population in studies from 20 countries: Gender-stratified systematic review and meta-analysis. BMJ, 386, p.e078964. https://doi.org/10.1136/bmj-2023-078964.
2Makhija, H., Davidson, J.E., Lee, K.C., Barnes, A., Choflet, A. and Zisook, S., 2024. National incidence of physician suicide and associated features. JAMA Psychiatry. [online] Available at: https://jamanetwork.com/journals/jamapsychiatry/fullarticle/2812571 [Accessed 2 Aug. 2025].
3Makhija, Hirsh & Davidson, Judy & Lee, Kelly & Barnes, Arianna & Choflet, Amanda & Zisook, Sidney. (2025). National Incidence of Physician Suicide and Associated Features. JAMA psychiatry. 82. 10.1001/jamapsychiatry.2024.4816.
4Medscape, 2025. The Medscape Physicians and Suicide Report 2025: 'A Lot More Still Needs to Be Done'. [online] Available at: https://www.medscape.com/slideshow/2025-Physician-Suicide-Report-6017981 [Accessed 2 August 2025].
5Downey K. White Coats, Courageous Hearts: True Stories of Doctors Reclaiming Their Humanity in a System That Challenges It. Stand Up (for) Doctors!; 2025.
