What do your symptoms mean to you?

Making sense of symptoms.

There are different ways to make sense of symptoms.

For example, you can think of symptoms as an annoyance, a threat, a punishment, or a message to take a break.

Our beliefs about symptoms are often unconscious, but they guide how we interpret and respond to symptoms.

For example, believing symptoms always signal damage leads might lead you to get medical tests done every time you experienced a new symptom.

Seeing symptoms as a message from the body to take a break might lead to another kind of response. You might adjust your lifestyle, and try to get more rest.

Language is a tool we have for making sense of the world.

We can use this tool in different ways.
For example we call use language to slice things up (analytic language).

Concepts split things up into categories, which are then taken to represent reality.

This use of language allows focus on details, analysis, and planning, but there is a cost.

Analytic thinking creates a sort of virtual reality, where things that don’t fit into neat categories are seen as less important, or less real. Our concepts and categories can end up holding up a distorting mirror what is really going on.

We live in a ‘analysis dominant’ culture. We see this reflected in our medical journeys. A diagnostic label acts as an explanation. If our symptoms don’t fit neatly into these categories, they can be seen as less important or less real.

However, this is only half of the story.

We also have another way of using language, that connects experience.

We can also use language to get in touch with the body, and find meaning and connection. This language of poetry and stories understands reality through sensing, intuition and feeling.

Both ways of using language are useful when you need to make sense of illness.

 

Making sense of illness

The thinking mind is always trying to make sense of things. This is especially true when we have new or confusing symptoms.

Finding an explanation for a symptom can reassure us that we are not seriously ill and help us find a path to feeling better.

We all hold a set of beliefs about what kinds of things can cause symptoms and how the body works.

These beliefs are built from the narratives we are exposed to in the culture, for example what doctors tell you, what you read on the internet, or how illness was handled in your family growing up.

These beliefs and stories become interwoven with our identity, and shape how we navigate the healthcare system and care for ourselves.

Imagine how you would act differently if you believed:

A) Symptoms are always directly related to a part of the body being injured, damaged or diseased.

A blood test or scan should reveal that damage. This is the only way to know what treatment can help.

B) Symptoms are messages from the body.

Symptom messages make us aware of things that are out of balance in our lives, so we can make changes to stay healthy.

C) Your symptoms are a complete mystery.

You don’t trust that you will ever understand them.

D) Symptoms act like a memory traces.

Symptoms (once established) can keep running through the body, even after the initial trigger has passed.

What if shifting the stories you tell about your symptoms could be a powerful tool in recovery?

Changing the story

Many people experience that a shift in their understanding of their illness is the first step of a process of recovery. (This applies even to very severe illness).

This may be because being open to thinking about symptoms in different ways lays the foundation for different routes to recovery.

If you have time, you can read how it made a difference for Terence to see symptoms as an opportunity for change.

And how it changed things for Zoe, to get new information on the neuroscience behind symptoms.

Here is some advice to explore:

1. Trust your body to recover.

Many people recover from functional symptoms, and trusting things can change is usually an important part of that recovery.

2. Stay curious about symptoms.

For example try welcoming a symptom in a friendly curious way.
How do symptoms feel different once you have done that?

3. Become aware of your echo chambers

Are they reinforcing your existing illness narrative?

4. Try Journalling

Work with writing prompts, alone or with others.

5. Test out your narratives in therapy

This can help introduce you become aware of your existing belief structures and introduce you to new perspectives.

Journalling exercise (re-write your story)

The whole exercise takes around 40 minutes to an hour.

If this is too long for you, spread the steps across several sittings.

 

Tools:

Using a computer or note-taking app works well.

You can also use pen and paper (scissors and glue optional).

 

The exercise
  1. Choose a prompt from the list below:

Prompt 1: Write the entire story of a symptom. Start with its origins, and write about it over time.

Prompt 2: Write a story about how illness is understood and managed in your family.

Prompt 3: Write a story about being told, or understanding something about your symptoms.

2. Write freely without censorship or judgement.

Set a time limit (e.g. 10-15 mins).

3. Read the story through and underline or highlight all words in your story that are describing reactions.

Reactions might be thoughts, feelings, memories, sensations, urges, or things you did. Don’t highlight any explanations for why you reacted: just the reaction itself.

4. Read the story a second time and in a different color, underline or highlight every external situation or fact.

These are the things that happen in the story, but not your thoughts about them or reactions to them.

5. Copy all the underlined or highlighted parts of the story to a new page.

6. Now write a new story. Include every item that is circled or underlined in your new story.

It is not important to write a better story, or a happier one, or a truer one. The only criteria is that it makes sense, and fits with the underlined and highlighted material.

7. Read both your old and your new story aloud.

Notice different emotional responses as you read aloud.

(adapted from Acceptance and Commitment Therapy-ACT)