How Much Do You Want to Know?

One of the hardest parts of living with Progressive Supranuclear Palsy isn’t the disease itself.

It’s the uncertainty.

How much do you want to know about the future? How far ahead do you want to think? Should you prepare for what might come, or simply concentrate on today? The uncertainty of what comes next can sometimes drive me mad.

My case is atypical in several respects, including the chronic nerve pain and the freezing episodes I experience while sitting. Add to that how much remains unknown about PSP, and nobody can tell me with much certainty what lies ahead.

That frustration recently led me to a psychological theory I had never come across before, and within minutes I realised it explained something important — not just about me, but about many people living with serious illness. It turns out I am in a minority.

The theory is called Monitoring and Blunting, developed by the psychologist Suzanne Miller, and it is remarkably simple.

When faced with a threat they cannot control, some people naturally become monitors. They reduce anxiety by gathering information, asking questions and preparing for the future. Others become blunters. For them, too much information increases anxiety, so they deliberately focus on today and deal with tomorrow when it arrives.

Neither approach is right or wrong. They are simply different ways of coping with the same uncertainty.

I recognised myself immediately.

When I was diagnosed with PSP, my instinct was to learn everything I could — to understand the disease, read the medical literature and prepare for what was coming. Part of that instinct comes from the journey to my diagnosis. I spent years living with uncertainty while Parkinson’s disease seemed the most likely explanation, although PSP was occasionally mentioned. That experience is far from unusual; many people with PSP go through years of evolving diagnoses before the clinical picture becomes clearer.

Even today there is no single test that can definitively diagnose PSP during life. The diagnosis is made by recognising the pattern of symptoms, supported by investigations that help exclude other conditions. Absolute confirmation is only possible after death, through examination of the brain. For someone wired like me, that is especially difficult. I naturally want clear answers, yet PSP is a disease that often refuses to provide them.

And here is the surprising part: learning more doesn’t increase my anxiety.

It gives me a greater sense of control.

Many people have kindly encouraged me to “live for today” and “not think too far ahead.” I understand exactly what they mean, and I know the advice comes from a place of kindness. But that isn’t how my mind works.

Thinking ahead is how I cope.

My wife completed Miller’s questionnaire too — it is a short, validated tool, easily found online, and worth ten minutes of anyone’s time. She turned out to be a monitor as well, although not quite as strongly as I am. That also taught me what the theory doesn’t explain: it doesn’t predict how people will emotionally process difficult news. We are both monitors, yet we often respond to exactly the same information in very different ways. The theory simply describes how people prefer to receive difficult information, not how they will feel once they have it.

Research has consistently found that both styles are common. One Dutch study of over 300 cancer patients classified 57% as blunters and 43% as monitors, and other studies show a similar split. The exact figures vary, but the message is consistent: there is no single “normal” way to face uncertainty.

That made me wonder whether we sometimes misunderstand one another.

Patients become frustrated because they feel they haven’t been told enough. Doctors become frustrated because some patients want every detail while others would rather avoid the conversation altogether. Families become divided because one person wants to discuss the future while another would rather leave it alone.

Perhaps nobody is being unreasonable.

Perhaps they are simply coping differently.

Take perhaps the hardest question of all: “How long have I got?”

A monitor is often relieved by an honest discussion, even if the answer is uncertain. A blunter may quite reasonably decide they don’t want that conversation at all. Neither response reflects courage or weakness — only two different ways of living with the same unknown.

For monitors, the absence of information can itself become a source of anxiety. That is particularly true in PSP, where information about progression is limited and there is currently no treatment that can stop the disease. The lack of treatment creates its own challenge: some people understandably conclude that if nothing can alter the course of the disease, detailed information serves little purpose.

I remember one doctor — not one of my own specialists — saying something along the lines of, “What does it matter? There is nothing we can do anyway, so what difference does it make?”

I understood the logic. But as a monitor, I experienced it completely differently.

Knowing may not change the disease.

It changes me.

It helps me prepare, make practical decisions, adjust my expectations, and gives me a sense of control in a situation where so much feels beyond my control.

All of this has made me wonder whether healthcare should think not only about personalised medicine, but also about personalised communication. Not every patient wants the same information. Not every patient wants it at the same time. Not every patient wants it delivered in the same way.

Not every blog reader wants to know all the details I publish!

Perhaps one of the first questions after diagnosing a life-changing illness should simply be:

“When it comes to information, are you someone who wants to know everything, or someone who would rather receive it gradually?”

That question won’t change the diagnosis. It won’t change the disease. But it might completely change the experience of living with it.

Healthcare professionals may not always have time to explore every patient’s communication style. But simply recognising that these differences exist could make conversations kinder, more effective and more personal.

For me, that is the real lesson.

The greatest kindness is not deciding how another person should face uncertainty.

It is taking the time to understand how they already do.