Spoons at Stake: The Hidden Costs of Medical Gaslighting for People with Chronic Illness(es)
“You’re in pain when trying to have an intimate evening with your husband? Have you tried drinking more wine?”
That is a real quote from a real medical provider to one of our clients experiencing a chronic illness of the pelvis.
Besides the obvious concerns that there are medical providers who may suggest imbibing alcohol as a substitute for digging more into a potentially complicated diagnosis, highlighting medical gaslighting is extremely important when talking about the effects it can have on mental health. Medical gaslighting is a term used to describe the experience of being dismissed or invalidated when seeking medical care (1). Some common phrases that come up in these experiences include:
“Do you think maybe your anxiety is causing this?.”
“All the bloodwork looks normal, so it looks like you’re fine.” (Keep in mind, many doctors will not run the proper blood work, and if they do order any blood work at all, it is often not comprehensive enough.)
And of course the aforementioned, “Have you tried more wine?”
When we don’t feel physically well for hours, days, weeks, or in some cases years, the effects on our mental health can be profound. Most of you reading this can attest to how your mood shifts when you are sick with the flu. Now imagine that the flu is continuous rather than a brief moment in time… brutal both physically and mentally. Those who experience the double whammy of 1) having a chronic illness and 2) being gaslit when seeking medical treatment, often also experience intense emotional distress, develop anxiety, and lose confidence both in themselves and in the medical system (1). In some cases, this experience becomes so all-encompassing and feels so hopeless that it can lead to the person having thoughts of suicide. Talking about this openly and honestly is important. We want to both be additional voices speaking out about this harmful experience that is sweeping medical systems, as well as therapists on the other side of the couch (or computer screen). We as therapists are trusted to bear witness to the pain it causes and support clients in navigating their journey towards resilience. When so many chronically ill people have lost trust in the healthcare system, being trusted to hold this space is incredibly humbling.
Additional Factors Influencing Medical Gaslighting
A person’s background and demographics also often impacts their experience of seeking medical care for a complex illness. Women with conditions such as fibromyalgia, PCOS, endometriosis, or chronic fatigue syndrome (ME/CFS) often struggle to have their symptoms taken seriously. Clients of color frequently report feeling dismissed or misunderstood by healthcare providers. Additionally, some studies show that members of the LGBTQIA+ community frequently experience medical gaslighting due to their physicians being inadequately trained on the needs of this population and making assumptions due to their lack of knowledge. And for those with rare or complex diseases, the journey to diagnosis and proper treatment can be fraught with instances of gaslighting, provider frustration, and overall invalidation.
Spoon Theory
In this theory, each "spoon" represents a unit of energy. While most people start their day with a relatively unlimited supply of spoons, those with chronic illnesses have a limited, often unpredictable number.”
Understanding “Spoon Theory”
To better articulate the daily reality of living with a chronic illness, many find "spoon theory" to be a helpful framework (3). Developed by Christine Miserandino, who lives with lupus, spoon theory is a metaphor for explaining energy management in chronic illness. In this theory, each "spoon" represents a unit of energy. While most people start their day with a relatively unlimited supply of spoons, those with chronic illnesses have a limited, often unpredictable number. Every activity, from showering to attending a work meeting, costs a certain number of spoons. In addition to having far fewer spoons to begin with, people suffering from chronic illness also often need more spoons for a single activity than others would. When the spoons run out, so does the person's energy, necessitating rest and recovery. In an effort to build community within this population, some people with a chronic illness affectionately refer to themselves as “spoonies.” Sometimes finding common experiences and building camaraderie makes a huge impact on our mental health, especially when facing something like chronic illness and pain.
Building Community
In an effort to build community within this population, some people with a chronic illness affectionately refer to themselves as “spoonies.”
The Intersection of Medical Gaslighting and Spoon Theory
For many individuals with chronic illnesses, the experience of medical gaslighting becomes even more frustrating when viewed through the lens of spoon theory. Imagine expending precious energy (spoons) to attend a medical appointment, only to have your experiences dismissed or disbelieved. This not only depletes physical energy but can also have a significant emotional cost, leading to:
Increased anxiety and depression
Erosion of self-trust and confidence (self-gaslighting)
Reluctance to seek further medical care
Feelings of isolation and misunderstanding
Exacerbation of existing mental health conditions
The combination of managing limited energy (spoons) and facing medical gaslighting can create a perfect storm for mental health challenges. Many individuals report feeling caught in a cycle of physical symptoms, emotional distress, and invalidating medical experiences.
How Therapy Can Help
As therapists here at Resilience Therapy, it is our role to provide a safe space where these complex medical gaslighting experiences can be processed and validated. We work together to rebuild self-trust and develop strategies for self-advocacy in medical settings. This might involve role-playing difficult conversations with doctors, exploring mindfulness techniques to manage the stress of medical appointments, or working through the deep emotions that arise from feeling unheard or disbelieved. In a therapy setting where we address chronic illness holistically, we also discuss the importance of building a support network, which might include bringing a trusted friend or family member to appointments. When necessary, we can collaboratively explore the option of seeking second opinions or finding new healthcare providers who are more receptive to one’s concerns. And of course, we will likely talk a lot about spoons!
Moving Forward
If you're struggling with the mental health impacts of medical gaslighting and chronic illness, or finding it challenging to manage your limited "spoons," know that support is available. Your experiences are real, valid, and your mental health matters just as much as your physical health.
Seeking therapy can be a powerful step towards healing and empowerment. While living with chronic illness and dealing with medical gaslighting can feel immensely isolating, you don't have to navigate these struggles alone.
Your journey towards well-being, with a full understanding of your unique needs and energy limitations, is important. With the right support, it's possible to develop resilience, self-advocacy skills, and strategies for managing both your physical and mental health in the face of chronic illness.
By, Drescher, A., on, U., 29, A., & (Hons), A. D. M. H. W. Bs. (2024, April 29). How to spot medical gaslighting and what to do about it. Simply Psychology. https://www.simplypsychology.org/medical-gaslighting.html
For LGBTQ patients, discrimination can become a barrier to medical care. www.heart.org. (2021, August 16). https://www.heart.org/en/news/2019/06/04/for-lgbtq-patients-discrimination-can-become-a-barrier-to-medical-care
Miserandino, C. (2003). The Spoon Theory. Butyoudontlooksick.com. Retrieved from [https://lymphoma-action.org.uk/sites/default/files/media/documents/2020-05/Spoon%20theory%20by%20Christine%20Miserandino.pdf]
