42. Illness uncertainty in chronic Lyme disease with Maddie Gravelle

In today’s podcast, Sarah speaks with Maddie Gravelle about her research into the consequences of illness uncertainty for Lyme disease patients. Gravelle is a student and researcher at Queen’s University in Kingston. She shifted her research focus from cancer to Lyme disease after witnessing the challenges her mother faced in dealing with both of these diseases. Her mother noticed that some aspects of Lyme disease were more challenging when compared to similar aspects of dealing with cancer. When Gravelle discovered that there was very little research regarding the psychological effects of Lyme disease, she decided to make that her research focus.

Illness Uncertainty Theory

Gravelle describes four different types of illness uncertainty that patients can be faced with as described in Mishel’s Illness Uncertainty Theory. She points out that many Lyme patients are faced with uncertainty in the areas of diagnosis, ambiguity around the disease, unpredictability and complex healthcare experiences. She highlights some of the many uncertainties that Lyme patients are faced with, not only in relation to the complex and unpredictable nature of the disease, but also as a result of “complex healthcare experiences” that many Lyme patients deal with.

“There really isn’t a lot of psychological research in Lyme, and there seemed to be a pretty big gap that needed to be filled so, that’s how I ended up on this journey, and I’m really excited to continue exploring this avenue and contributing to our understanding of how Lyme impacts us in our mental wellness.”

Madelaine Gravelle

Perceived believability and social support

One of the research findings that stood out for Gravelle was how illness uncertainty and depressive outcomes were associated with perceived believability and social support. Lyme patients who do not present with “classic” symptoms of Lyme disease often find themselves not being adequately addressed by healthcare providers. For Lyme patients, perceived believability (rather than social support) was related to depressive outcomes. Gravelle points out that future research in this area needs to be more nuanced in relation to complex chronic diseases such as Lyme and fibromyalgia. 

“Different aspects of illness uncertainty including a lack of diagnostic information, which a lot of people with chronic Lyme experience, there’s a lot of ambiguity…it can be unpredictable…and [involves] complex healthcare experiences.” 

Madelaine Gravelle

Psychological consequences of chronic pain 

Gravelle introduces us to the concept of pain catastrophizing. She explains that there are three aspects to this phenomenon. Rumination occurs when people are thinking about their pain a lot. Magnification happens when focusing on the pain makes it feel worse. As Gravelle notes, feeling helpless about pain is self explanatory. She points out that these are natural responses to long term pain that many Lyme patients are faced with. Her research shows that these responses to pain are also related to illness uncertainty, and the relationship between illness uncertainty and depressive outcomes.

“The way that we’re approaching this concept of social support in our scientific research, really needs to be more nuanced than we’re classically approaching it, especially in the context of Lyme or other chronic contested illnesses like fibromyalgia.”

Madelaine Gravelle

Psychological and social supports

To counteract these effects, Gravelle points to cognitive restructuring and other psychological supports to help patients deal with their response to pain. She explains that there is research connecting the mental and physiological aspects of pain.She asserts that Lyme patients need support in dealing with the psychological effects of experiencing pain. In addition, patients are often dealing with reduced social interactions as a result of their pain and other Lyme symptoms. Sarah discusses her experience of tracking symptoms, including pain, and the role this had in coping with her Lyme symptoms. Gravelle points out that this type of information could be a valuable source of data for future research. 

“We’re seeing that [pain catastrophizing] is related to illness uncertainty, and it’s related to the relationship between illness uncertainty and depressive outcomes. So this tells us that it’s important for the healthcare approach to Lyme to include things like cognitive restructuring or other kinds of psychological supports.”

Madelaine Gravelle

Variability in Lyme disease: does tick location play a role?

Gravelle outlines her next research project at Queen’s University with the Pain Affect and Cognition Lab. It is a collaborative project in which geographical and biological information about ticks will be compared to patient experiences and patients’ biological changes. This new research aims to examine whether ticks from different locations lead to different presentations of Lyme disease patients. Their hope is that understanding different clusters of symptoms will lead to better outcomes for Lyme patients. Thank you Gravelle for exploring these important aspects of Lyme disease and sharing your findings with us! 

Related

• Mishel’s Uncertainty in Illness Theory
• Pain Catastrophizing – How It Works & Available Treatments
• Pain Affect and Cognition Lab