BEYOND SYMPTOMS

Summary:

This illustrated story explains what PSS is, discusses the challenges faced by people with PSS, and explores what you can do to make living with PSS a little better.

Reading time: approx. 7 minutes

When the symptoms are severe, this can be the start of a whole series of tests. These don't always lead to a clear-cut answer. This search is often confusing and frustrating. It can feel like searching for a needle in a haystack.

When somatic symptoms last a long time and cause you a lot of discomfort, we call these Persistent Somatic Symptoms, abbreviated to PSS. It doesn't matter whether a cause for your symptoms has been found or not. Even if a clear cause or diagnosis is found, that doesn't mean there's a "magic pill" that will make you better. Sometimes you still experience a lot of discomfort, even if the treatment is working well and the disease seems under control.

However, it's often extra difficult if the cause isn't found. This raises all sorts of questions and uncertainties: "What's wrong with me?" "How do I explain this to others?" and "Do others believe I'm really suffering?"

Previous research has shown that people often feel they're not taken seriously by i.a. healthcare professionals. They also struggle with the way their environment reacts to them.

That's why we find it important to emphasize this: your symptoms are real. They're not nonsense or fake.

Our research

Persistent somatic symptoms are very common. There's a lot of scientific research on this topic, and we're learning more and more.

Researchers at Amsterdam UMC followed a group of 325 people with persistent somatic symptoms over the course of five years. We included, among others, people who had been experiencing pain and fatigue for a very long time.

Until now, little was known about how people with PSS fare over the years, and what can worsen or reduce their symptoms. With our study, we wanted to learn more about this process. 

In our five-year study, we found that the course of symptoms was mostly rocky, with highs and lows. These highs and lows could change significantly from week to week, from day to day, and even from moment to moment.

Worsening symptoms had a huge impact on the daily lives of the people in our study. They often struggled to manage these lows. Managing their boundaries was especially challenging: finding a balance between doing neither too much, nor too little.

Some people also noticed that their symptoms got worse when they had negative emotions.

Influences

All kinds of things can influence your symptoms. For example: previous research shows that you're more likely to develop PSS if bad things happened to you as a child. Like domestic violence, the death of a family member, or being bullied at school. 

In our research, we discovered that painful events in your childhood can also have a negative impact on the way you experience PSS, and the way you are able to function with PSS. So you can have it worse than someone who has PSS as well, but didn't experience such painful things as a child.

A buildup of painful experiences – from childhood to later in life – also means that you have a greater risk of developing more severe PSS.

A painful, upsetting incident can also trigger the development of PSS.

Thoughts and behavior can also influence PSS. When you have a lot of dark thoughts, or when you start avoiding activities and stimuli, this can worsen your physical symptoms. Our research shows that these things are indeed connected.

We know our brains are able to evolve. If you often play the guitar, you develop the area in your brain that controls your fine motor skills (dexterity, hand coordination).

The same mechanism can influence PSS as well: if a lot of attention is paid to your symptoms, you can start to experience more discomfort. Our research confirms it works like that: more focus on the symptoms is related to more discomfort.

All in all, PSS involves a complex combination of different influences, unique to each individual. Some things make you vulnerable to developing PSS (like a difficult childhood). Other things can trigger PSS (like an infection). And other things influence the course of PSS (like feelings of fear and sadness, caused by the symptoms).

So what's next?

If your symptoms don't go away and have a big impact on your life, it's important to explore what's influencing them. You can work with your GP (or another healthcare provider) to explore which things are playing a role in your PSS, and what could be influencing your symptoms.

Together, you can untangle the knot...

...of all the things that could play a role in your symptoms. 

This way, you'll get more and more insight into the mechanisms that worsen your symptoms, or improve them.

If you explore the consequences of your symptoms, instead of only focusing on the cause, you'll often discover other ways to improve them. These ways aren't necessarily meant to cure your symptoms, but rather to make your life with these symptoms as pleasant as possible.

Many other healthcare providers can assist in this process. For example, an occupational therapist can help you manage your energy. A psychosomatic physiotherapist can teach you to feel what your body is telling you. And a physiotherapist can help you build up your fitness. 

Participants in our study mentioned that it helped them to shift their focus from searching for causes to learning how to better manage their symptoms. They often called this 'flipping the switch'.

They also shared how they gained more control over their symptoms, and managed to curb their worsening. For example, by accepting the limits of their body's capabilities, and adapting their daily schedules to those limits and capabilities. And by considering more carefully what they truly want and need, and to learn to say "no" to everything else.

This isn't easy, and you have to be ready to take such steps. But if you learn to look beyond your symptoms, you can ultimately live a better life.

text: Hieke Barends & Merel Barends    illustrations: Merel Barends   latest version 10/2025

created with support from Amsterdam Public Health research institute