A new study of Australians living with chronic physical health conditions has found family members and doctors often dismiss their experiences, leading to significant mental distress.
Chronic conditions that cause symptoms like pain and fatigue are often accompanied by a lack of understanding from others, and even disbelief or dismissiveness.
This is known as illness invalidation, and it has been shown to contribute to increased mental distress in people who live with these conditions, often in the form of depression and/or anxiety.
To investigate both its source and its impact, researchers from Macquarie University surveyed 1600 people with confirmed or suspected chronic conditions on their experiences of illness invalidation from family members, medical professionals and their spouses or partners.
The results were published in General Hospital Psychiatry recently, and showed that a person’s family was the most likely to invalidate their illness, primarily through discounting symptoms, followed by a lack of understanding.
Medical professionals were the second most likely to engage in these behaviours, especially for patients with multiple chronic conditions, those who had not yet received a confirmed diagnosis, or when symptoms had been ongoing for more than five years.
Discounting by family members caused the most significant psychological distress, followed by medical professionals.
The serious impact of dismissal
Nearly 90 per cent of participants in the study were female, and the most commonly reported conditions included chronic fatigue, fibromyalgia, endometriosis, irritable bowel syndrome, and different forms of arthritis.
Just over 70 per cent had two or more chronic conditions, with the same percentage reporting they had been experiencing their symptoms for five or more years.
We would like to see training for medical professionals adapted to ensure they understand the impact of an invalidating experience.
First author and PhD candidate Thomas Woldhuis says in addition to this, chronic illnesses that caused pain or fatigue were associated with the highest levels of invalidation.
“Conditions like fibromyalgia and chronic fatigue, for example, tend to be dismissed more than conditions like rheumatoid arthritis or multiple sclerosis, both by family members and by medical practitioners,” he says.
“It may originate from a lack of understanding of or experience with the condition, or be from well-meaning attempts to be reassuring, but whatever the intention, it is a significant stressor for the patient.
“Invalidation was associated with higher levels of psychological distress when it came from family members, and it can lead to the patient becoming self-critical and even feeling guilty about their illness.
“When someone casts doubt on how your symptoms are affecting you by saying things like, ‘The pain is all in your head’, or ‘You don’t look unwell’, it adds an extra level of distress that in turn makes it harder to adjust to and manage the condition.”
Kristie’s experience of invalidation
Kristie Grey, 28, began experiencing the symptoms of endometriosis when she was just 14, and she has been dealing with the hurt of dismissal and disbelief from family members, medical professionals, friends and acquaintances ever since.
Battle to be heard: Endometriosis sufferer Kristie Grey, pictured above, spent years having her illness experience dismissed before finding empathy from family and the hospital system. Photo supplied.
There was a history of pelvic pain in the family, and she had seen her mother in terrible pain, so naturally she went to her first.
“You go to your mum for comfort and help, but she just told me to deal with it.
“Getting a diagnosis took five years and visits to multiple doctors, and when I finally did and had my second laparoscopy, the specialist revoked my diagnosis.
"He actually threw my file at me while I was in my hospital bed and said it was so mild that I might as well not even have it.
I shouldn't have to feel ‘lucky’ that someone believed me.
“Later laparoscopies confirmed endometriosis around my pelvic organs, but that took another four years and a further battle for another gynaecology referral.
“At the time, I thought, if my mum thinks I’m being a big sook, and I’m going to doctors who are saying that as well, then clearly, I’m just a really big sook.
“I feel that I was lucky that my partner believed me, as he saw my symptoms and the toll they were taking on me every day.
“It shouldn't have to be that way – I shouldn't have to feel ‘lucky’ that someone believed me.
“People have become better since those early days, but it’s still difficult to let go of experiences like this.”
Her family is now more understanding and supportive, and she has a more empathetic treatment team with a good comprehension of endometriosis, but she continues to struggle with anxiety, depression and post-traumatic stress disorder.
Having to go to a new doctor or an emergency department is enough to trigger her anxiety, meaning she is often hyperventilating or crying by the time she arrives, making the pain even worse.
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When she is very unwell, both her work in the community care sector and her social life are impacted. The rest of the time, the mental load of having to plan and be prepared in case she does become unwell can be overwhelming and exhausting.
“I can feel like I’m a burden, like I’m a bit too much,” she says.
“But when I’m with people who understand, like my little network of people who also have endometriosis, I find my symptoms of depression and anxiety lessen. I just feel like … a person.
“I was in a hospital emergency department recently and the doctor was wonderful. She just asked me ‘What do you need right now to feel better?’
“That just brought me to tears. Nobody had ever asked me that before.”
Better education needed
Senior author, Associate Professor Milena Gandy says the study has highlighted a need for greater awareness of and education about chronic conditions and their impacts, both among clinicians and the wider population.
Dismissal: Thomas Woldhuis, left, and Associate Professor of Psychology Milena Gandy, right, investigated the impact of illness invalidation in a study of 1600 people living with chronic conditions.
“Improving understanding and reducing the stigma related to these conditions could not only foster a more supportive environment for patients, but also lead to improved health outcomes,” she says.
“We would like to see training for medical professionals adapted to ensure they understand the impact of an invalidating experience, and we hope these findings will be a step towards more empathetic and effective treatment.”
Areas for further study include the role of gender in illness invalidation, specifically whether females experience it more often than males, and if so from whom.
Milena Gandy is an Associate Professor of Psychology at Macquarie University, a clinical psychologist and a member of the Macquarie University Lifespan Health and Wellbeing Research Centre.
Thomas Woldhuis is a PhD candidate at the University of Sydney and a Research Assistant in the School of Psychological Sciences at Macquarie University.
