Living with the Guilt

In February 2026, I wrote an article called Guilt – the Energy Thief We Can’t Afford. Almost six months later, I’m still grappling with the same issue.

It is an emotional problem, not a logical one.

I know I didn’t give myself PSP. I didn’t choose this disease, and I didn’t ask for any of it. Logically, I have nothing to feel guilty about. Yet the guilt remains. As I wrote in my earlier article, I know it doesn’t help, but knowing that isn’t enough to make it disappear.

Many members of my family, and a number of close friends, are suffering alongside me. They have put parts of their own lives on hold. They are grieving for me while I am still here. In one important respect, I actually have an advantage over them. I process much of what I am feeling by writing this blog. It is my therapy. Many of those closest to me don’t have that same outlet. I feel incredibly guilty about that.

I am a religious person of deep faith and observance, and I would never do anything to shorten my life. On the contrary, I embrace life. But for the first time, I have begun to understand, not agree with, but understand, why some people with terminal illnesses choose the ‘Swiss option’ because they believe it will spare their families further suffering. It almost feels heretical for me to write those words, but they are true. For the avoidance of any doubt, it is absolutely not an option for me. Yet illness has given me an empathy for perspectives that, until now, I simply couldn’t comprehend.

Even so, I still carry the guilt. As irrational as it is, so many people are emotionally invested in my PSP. In some ways, this blog probably magnifies that attention. But it is a trade-off I am willing to make because it gives me a place to express my feelings, helps me process them and, I hope, shines a light on the reality of living with PSP.

I’ll be honest. I also feel guilty when the opposite happens.

When people do exactly what I genuinely want them to do, carry on living their lives, I sometimes feel a small pang of jealousy. Family and friends go on holiday, travel, enjoy a meal together or simply play a game of tennis. Meanwhile, I watch from the sidelines. It hurts, and I would be lying if I said otherwise. Then I feel guilty for feeling jealous in the first place.

Last night, my family went out for dinner. My wife and I were not part of the original plan, and when my wife joined them at my urging, I’ll admit I felt that familiar pang of jealousy, quickly followed by guilt for feeling that way. But then I reminded myself that this is exactly what I want. I don’t want the people I love to stop living because my world has become smaller. I want them to laugh, travel, celebrate and make memories.

Instead, I watched the England game and later went for a walk in my wheelchair with my carer. It turned out to be a lovely evening in its own right.

I suppose that means I can’t really win. If the people I love put their lives on hold, I feel guilty. If they carry on living as I want them to, I sometimes feel jealous, and then guilty for feeling jealous.

So what am I going to do about it?

I’m going to keep fighting the guilt.

Not because I expect to eliminate it completely. I suspect I never will. But because guilt serves no useful purpose. It doesn’t help my family. It doesn’t help me. It certainly doesn’t change my diagnosis. All it does is steal precious emotional energy that is better spent appreciating the life I still have.

Some days I’ll win that battle. Some days I won’t.

But it’s a battle worth fighting.

After all, PSP already takes enough from me.

I don’t intend to let guilt take anything else.