We Need to Be Kinder to Ourselves

The last few days have seen me write some difficult articles. They have been honest because they reflected exactly where my head has been. Living with Progressive Supranuclear Palsy is not always inspirational. Sometimes it is frightening. Sometimes it is lonely. Sometimes it feels as though the disease changes the rules just as you think you have finally begun to understand them. After talking to a handful of people over the past few days, however, I have come away with one thought that has stayed with me more than any other.

We need to be kinder to ourselves.

The more I reflected on that idea, the more I realised how extraordinary the challenge we face really is. Imagine taking an ordinary family and placing them at the foot of one of the highest mountains in the world. They have no warning, no training, no specialist equipment and no experienced guide. Then imagine telling them that they are expected to climb it and that failure simply isn’t an option. If they struggled, nobody would accuse them of being weak or lacking commitment. Nobody would tell them they simply needed to try harder. We would all recognise that the challenge itself was extraordinary and that expecting success under those circumstances would be completely unrealistic. Yet I sometimes wonder whether this is exactly what we expect of ourselves after a diagnosis of PSP.

Almost overnight, a family finds itself climbing a mountain it never expected to face. Suddenly we are trying to understand neurology, physiotherapy, speech therapy, medications, nutrition, swallowing, mobility, finances, benefits, psychology and long-term care planning. At exactly the same time, we are processing grief, uncertainty and fear while trying to preserve our relationships and continue living something that still resembles a normal life. None of us trained for this. None of us chose it. Even worse, just when we begin adapting to one challenge, another appears. One symptom stabilises while another emerges. One fear subsides while another takes its place. The mountain never really becomes easier; the route simply keeps changing beneath our feet.

Perhaps that is why I have come to believe that one of the greatest mistakes we make is the way we judge ourselves. As patients, we compare ourselves with the husband, wife, parent or friend we used to be. We become frustrated because we cannot contribute in the same way, because our patience is shorter, our energy is lower or our independence has been eroded by the disease. At the very same time, those who care for us often place equally impossible expectations upon themselves. They believe they should always know the right thing to say, always respond with patience, never become tired, never lose hope and never feel overwhelmed. When they inevitably fall short of those impossible standards, they often conclude that they have somehow failed.

The reality, of course, is very different. Life is already complicated without a progressive neurological disease. Every marriage experiences difficult periods. Every family argues. Every parent gets things wrong. Every relationship requires compromise, forgiveness and patience. PSP doesn’t replace those ordinary challenges; it magnifies them. It asks more of every member of the family while simultaneously reducing the physical and emotional resources available to meet those demands. Yet despite all of that, many of us continue judging ourselves against the standards we lived by before PSP entered our lives, as though nothing fundamental has changed.

What struck me most was discovering that psychology has begun to recognise exactly the same pattern. A major 2025 meta-analysis, bringing together 51 studies involving more than 15,000 people living with chronic illnesses, found that people who practised greater self-compassion experienced significantly lower levels of psychological distress, with some of the strongest findings among people living with neurological conditions. The researchers were not suggesting that people should ignore reality or simply “think positively”. Instead, they concluded that treating ourselves with the same kindness, patience and understanding that we would naturally offer someone else facing the very same circumstances is one of the healthiest ways to cope.

That finding resonated deeply with me because it simply puts scientific language around something many families affected by PSP eventually discover for themselves. If another family told me they had argued, felt exhausted or reached the end of their emotional reserves, I would never tell them they were failing. I would remind them how extraordinarily difficult their circumstances were. I would encourage them to keep going and reassure them that they were doing far better than they probably realised. Somehow, though, offering ourselves that same grace is much harder. We continue comparing ourselves with the people we were before PSP, forgetting that we are no longer living the lives we once had. The rules have changed, but the expectations we place upon ourselves often have not.

Perhaps that is why I have also changed the way I think about success. Throughout our lives we are taught to aim for perfection. We want to be the perfect husband or wife, the perfect parent, the perfect patient or the perfect carer. We assume that if we love deeply enough and work hard enough, we should somehow get everything right. But perhaps there isn’t a perfect score available. If there were a report card for living with PSP, I suspect that even the strongest, most loving and most resilient family in the world would never receive full marks. Not because they lacked commitment or compassion, but because the examination itself is impossibly difficult. Every patient has days when they become frustrated. Every spouse becomes exhausted. Every family experiences disagreements. Every carer wonders whether they are doing enough. Those moments are not evidence of failure. They are evidence that ordinary people are attempting something extraordinarily hard.

Perhaps the goal, then, is not to reach the summit. Perhaps the goal is simply to keep climbing. To keep adapting as the path changes beneath our feet. To keep loving one another when it is difficult. To keep communicating when misunderstandings arise. To keep forgiving ourselves and each other when we fall short of the standards we once set for ourselves. Most of all, perhaps the goal is to recognise that kindness is not the opposite of resilience. In many ways, it is resilience.

Nobody would expect an ordinary family to stand at the foot of one of the highest mountains in the world and instinctively know the way to the top. Why, then, do we expect ourselves to know how to live with PSP from the moment it enters our lives? Why do we criticise ourselves for not always saying the right thing, doing the right thing or feeling the right thing when we are all trying to navigate terrain we have never walked before?

Perhaps one of the greatest lessons this disease has to teach us is not how to become perfect. Perhaps it is how to become kinder. Kinder to the people we love. Kinder to the people who care for us. And, perhaps hardest of all, kinder to ourselves.