fbpx

Living Well with Chronic Illness: How to Use Behavioural Experiments to Redefine What’s Possible

Imagine waking up every day with a body that seems to have its own set of “rules” due to chronic illness. In this reality, every ache, pain, or discomfort spurs up a kind of “negotiation” in your mind about what is and is not possible for you today. In a world that often glorifies constant motion and relentless pursuits, you must face the challenge of learning to live life with a different rhythm. This is the reality for millions living with chronic illness.

Track athlete with performance anxiety preparing to run at the starting line

How does the pace of life change when every step requires a careful consideration of your energy reserves?

Can the concept of ‘living well‘ be redefined when health becomes a daily balancing act of tradeoffs?  Below, we examine this question, and offer suggestions on how to make the most of one’s life in the face of chronic illness.

It is well-known that chronic illness often causes a variety of problems across several life domains that necessitate living with a “new normal.”  Here are just a few examples:

  • Chronic pain conditions (e.g. fibromyalgia, arthritis) may cause difficulty with routine tasks and sleep
  • Inflammatory bowel syndrome involves significant digestive issues (e.g., abdominal pain, constipation), which may affect social and travel plans
  • Type II diabetes causes blood sugar fluctuations, which may lead to fatigue and dizziness

It is common to experience some form of anxiety or depressed mood when living with chronic illness (1). These experiences are often accompanied by the tendency to make negative predictions about how certain situations will turn out. 

We may tend to: 

  1. Overestimate the likelihood that our health symptoms (e.g., pain flare-up, urgent need to use the washroom, etc.) will arise in various situations
  2. Overestimate how severe health symptoms will be under various circumstances (e.g., fearing a severe IBS flare-up while commuting to work)
  3. Underestimate our ability to tolerate health symptoms or cope with negative situations that arise (e.g., I won’t be able to excuse myself to use my coping skills)
  4. Ignore other factors or circumstances which suggest that things will not be as bad as we are predicting
Anxious woman with chronic illness touching head and feeling pain while another person touches her shoulder for support

The Trap of Negative Predictions

When we jump to such negative predictions about the future, we tend to engage in unhelpful behaviours that inadvertently increase or maintain anxiety and depression. These can include:

  • Avoiding meaningful activities (e.g., work, hobbies, socializing, various forms of exercise)
  • Stopping an activity as soon as we notice any symptoms
  • Avoiding any future attempts to engage in activities during which we experienced symptoms

Given how unpleasant flare-ups of chronic illness can be, this makes perfect sense on the surface. After all, nobody would expect you to stand with your hand on a hot stove or finger in a socket and simply endure the pain – in these cases, avoidance would be the adaptive response!

At the same time, the problem with regularly using these avoidance strategies for situations where the outcome is unknown is that they prevent us from actually testing out our negative predictions. This makes it very hard for us to ever have a different experience from what we expected, so we continue to fear the worst.

For example, let’s imagine you have been invited to a BBQ and your negative prediction is: “I will have severe symptoms, be embarrassed, and not be able to enjoy anything.”  Based on this prediction, it would be tempting to decline the BBQ invitation altogether, or agree to attend, but then cancel plans as soon as you feel uncomfortable. Although these avoidant strategies may help you reduce your discomfort in the short term,  they also contribute to the reinforcement and continuation of your negative predictions. Likewise, habitual avoidance of feared (yet, often highly valued) activities leads to the loss of pleasure and fulfillment in one’s life, as well as an increase in any associated anxiety and/or depressed mood.

Sad young woman with chronic illness using her smartphone at home party

Testing Our Negative Predictions

When it comes to breaking the trap of negative predictions and excessive avoidance, it is helpful to think of yourself as a scientist, putting your thoughts to the test to examine the evidence for and against your predictions, instead of assuming that all of your negative predictions are true. Below is a framework for designing what Psychologists often refer to as “behavioural experiments” (2) to test these predictions. 

What could have been an alternative way to handle the BBQ situation described above? A different approach could be to go to the BBQ, try your best to socialize and have a nice time, then use the resulting experience as evidence to test your original negative predictions.

A girl doing a science experiment

Plan your Behavioural Experiment

A key feature of a behavioral experiment is that the predictions being tested have to be objectively defined and measurable, just like any other science experiment! This means that predicted outcomes cannot only be in the realm of one’s mind and take the form of unobservable or vague expectations (e.g. I won’t be able to tolerate the discomfort and will be poor company. Others will think I’m acting weird.). Instead, predictions should clearly state what you would observe in the situation with your eyes and ears, or describe what you would experience in your mind and/or body.

  1. What predictions are you trying to test? Be specific about what will actually happen if your predictions come true. It can be helpful to consider both predictions about what might happen both inside your body / mind (e.g., “I will experience severe symptoms and uncontrollable panic”) and in the outside world (e.g., “Others will avoid me when they see I’m uncomfortable”).  Rate how strongly you believe these predictions (0-100 with 100 being certain about the predicted outcome): 

Example:

  • I will have severe symptoms at the BBQ (90/100)
  • People will stare or make an insensitive comment when I have symptoms (75/100)
  1. What are your alternative predictions? Rate how strongly you believe these (0-100). 

Example:

  • I won’t experience any symptoms (10/100)
  • I will have mild symptoms only (25/100)
  • I will have moderate symptoms only (40/100)
  • No one will stare or make insensitive comments when I have symptoms (20/100)
  • People will express sincere concerns when I have symptoms (15/100)
  • I will be able to stay at the BBQ and have an enjoyable time even if symptoms arise (30/100)
    1. Design the experiment – Try to be as specific as possible about what you will do to test your predictions, when and how long it will take, and with whom. Be creative and ask for help where needed. 
  • I will go to the BBQ at 6pm, alone, and will stay for at least one hour. I will try to make conversation with at least three people, including one that I did not know already. I will try to eat a light meal.
  1. Take baby steps (i.e., make sure you set your experiment at an appropriate level). It is best to start simple and increase the intensity gradually. Identify likely problems and how to deal with them.
    • There may not be anyone I know at the BBQ. Though I will know the host(s) and I can ask to be introduced to some other people.  

Execute and Evaluate your Behavioural Experiment 

  1. Carry out the experiment as planned. Remember to carefully take note of your thoughts, feelings, and behaviours, as well as the actions of others around you.
  1. Write down what happened – What did you observe? Consider the evidence for and against your original prediction. What did this say about your negative prediction:

Example:

  • I felt quite nervous at first and wanted to leave. I used breathing and grounding skills that my therapist taught me to calm myself. The host was friendly, asked about my health, and showed genuine concern when I mentioned I am dealing with a health issue. I also spoke to Kelly, who I hadn’t seen in some time. Kelly introduced me to her partner, Kamal, and we had a good chat about travel. At one point I started having mild symptoms, but Kamal didn’t seem to notice and the symptoms passed after a few minutes.  
  1. What did you learn?

Example:

  • I am capable of tolerating mild symptoms and enjoying myself in a casual social situation.  
  1. Rate how strongly you now believe your original predictions and the alternatives (0-100):

Example:

  • I will have severe symptoms at the BBQ (60/100)
  • People will stare or make an insensitive comment when I have symptoms (45/100)
  • I won’t experience any symptoms (15/100)
  • I will have mild symptoms only (40/100)
  • I will have moderate symptoms only (30/100)
  • No one will stare or make insensitive comments when I have symptoms (40/100)
  • People will express sincere concerns when I have symptoms (50/100)
  • I will be able to stay at future BBQs and have an enjoyable time even if symptoms arise (50/100)

When using this approach, remember that the strength of your negative and alternative predictions will change gradually as you complete more experiments. As with any science experiment, replication is essential! 

Elderly with chronic illness happy socializing

It is recommended to do this work with a qualified mental health professional (e.g., a Psychologist that specializes in Health Psychology) to receive evidence-based care and assistance with carefully tailoring this approach to your health condition. By applying these steps and fostering a curious and resilient mindset, you can actively participate in your journey to better manage your chronic health condition. With dedication and a well-structured framework, the path to improved health management and optimal living is within reach!

References:

Moussavi, S., Chatterji, S., Verdes, E., Tandon, A., Patel, V., & Ustun, B. (2007). The comorbidity of chronic illness and depression: A systematic review and meta-analysis. Journal of the American Medical Association (JAMA), 297(9), 923–931.

Rouf, K., & Hackmann, A. (2004). Oxford Guide to Behavioral Experiments in Cognitive Therapy. Oxford University Press.

Dr. Abid Azam

Dr. Abid Azam

Clinical Psychologist

Please note: this article is for informational purposes only, and is not intended as a substitute for therapy or advice from a qualified professional.