“I Just Want to Feel Safe Going to a Doctor”: Experiences of Female Patients with Chronic Conditions in Australia, 2022, Merone (3+ with ME/CFS)

[Dolphin]

Women's Health Reports
Vol. 3, No. 1
Original Article
Free: https://www.liebertpub.com/doi/10.1089/whr.2022.0052



“I Just Want to Feel Safe Going to a Doctor”: Experiences of Female Patients with Chronic Conditions in Australia
Lea Merone
,
Komla Tsey
,
Darren Russell
, and
Cate Nagle

Published Online:22 Dec 2022
https://doi.org/10.1089/whr.2022.0052

Abstract

Background:

The androcentric history of medicine and medical research has led to an ongoing sex and gender gap in health research and education. Sex and gender gaps in research and education may translate into real-life health inequities for women. This study aimed to explore the experiences of female patients with chronic health conditions in the Australian health system, considering existing sex and gender gaps in medicine.

Methods:

This qualitative study used semistructured in-depth interviews with a sample of adult women with chronic conditions in Australia. Thematic analysis was undertaken, guided by Braun and Clarke. Software NVivoX64 assisted in the management of the data. Coding was performed before grouping into subthemes and central themes. To allow for potential researcher biases, the principal researcher engaged in the practice of reflexivity, including the writing of detailed notes during analysis.

Results:

Twenty adult Australian women with chronic conditions were interviewed. Diagnoses were varied and included Ehlers–Danlos syndrome, chronic fatigue syndrome, functional neurological disorder, and inflammatory bowel disease. Four central themes emerged: diagnostic difficulties; spectrum of health care experiences; understanding medical complexity; and coping with symptoms.

Conclusions:

Women with chronic conditions in Australia report pain, fatigue, and suffering that significantly impacts upon their daily lives. There was a shared experience of feeling that the pain and suffering of women was dismissed or not taken seriously. Many women expressed trauma because of their experiences in health care and often this led to a fear of accessing health services. The participants highlighted a need for more knowledge, understanding, and empathy from health care practitioners.

 

[Dolphin]

Without male controls, it's questionable one can assume that these experiences are specific to women.

 

[Trish]

Without male controls, it's questionable one can assume that these experiences are specific to women.

While that's obviously true, I don’t see anything in the abstract suggesting these experiences are unique to women, so the authors are not assuming that they are. Maybe someone will do a similar study with men.

 

[Andy]

Without male controls, it's questionable one can assume that these experiences are specific to women.

Who is making that assumption, as far as I can see this paper isn't?

My bolding below.

This study aimed to explore the experiences of female patients with chronic health conditions in the Australian health system, considering existing sex and gender gaps in medicine.

This study presents the experiences of Australian women with complex chronic health conditions in the health care system.

 

[Milo]

Without male controls, it's questionable one can assume that these experiences are specific to women.

Indeed, however this was a gender-based study. It was also a qualitative study on women's experience with chronic disease and its associated contacts with health care professionals.

The authors mention in their background paragraph: "The androcentric history of medicine and medical research has led to an ongoing sex and gender gap in health research and education. Sex and gender gaps in research and education may translate into real-life health inequities for women. This study aimed to explore the experiences of female patients with chronic health conditions in the Australian health system, considering existing sex and gender gaps in medicine.". So the research question is what are the experiences of female patients.

History also shows that generally speaking, men get faster diagnosis than women. It is a fact. It may not be so for ME but when talking "generally"- it has been shown that men get faster service, quicker diagnostic tests etc. As opposed to woman where their condition is more believed to be "in their heads".

I think it would be a good research question to ask what are the experiences of both men and women in health care for all living with ME (and perhaps other chronic conditions) and what are the differences perceived and real.

It has been my experience that some male patients in my area had access to more elaborate testing to rule out other diseases compared to the average female patients receive.

Women studies are important- but then there is no need to get engrossed into it when there is a desperate need to find biomarkers and mechanism of disease with ME. And then we also know that the mechanism of illness (or sex response) is different in men and women in terms of metabolic pathways.

 

[Dolphin]

While that's obviously true, I don’t see anything in the abstract suggesting these experiences are unique to women, so the authors are not assuming that they are. Maybe someone will do a similar study with men.

There is more to a paper than the abstract.

Skimming down the paper last night, I noticed gender was brought up e.g.
“Several women attributed their adverse experiences and difficulties in obtaining a diagnosis and adequate treatment to systemic and institutionalized sexism and misogyny.”

 

[Dolphin]

I think it would be a good research question to ask what are the experiences of both men and women in health care for all living with ME (and perhaps other chronic conditions) and what are the differences perceived and real.

I think that approach would be better approach to ascertain what experiences relate to gender and which relate more to general experiences both men and women with the condition face.

 

[Trish]

There is more to a paper than the abstract.

Skimming down the paper last night, I noticed gender was brought up e.g.
“Several women attributed their adverse experiences and difficulties in obtaining a diagnosis and adequate treatment to systemic and institutionalized sexism and misogyny.”

@Dolphin, I don't think anyone here is saying men with ME/CFS aren't also subjected to problems with being believed and with getting good and timely diagnosis and treatment. That's not the point of the paper.

If some women attribute their mistreatment to institutionalised sexism and misogyny that should be acknowledged and dealt with appropriately. Are you suggesting the women are wrong? Or that sexism and misogyny don't exist?

 

[Dolphin]

Or that sexism and misogyny don't exist?

I’m definitely not saying sexism and misogyny don’t exist. I’m saying the methodology is far from ideal in terms of rigorously ascertaining which elements of the experiences relate to gender/(institutionalised) sexism/misogyny and which are experiences both men and women with the conditions discussed experience.

 

[Trish]

OK, fair enough. I will just say this one further point and then shut up.

I have experienced misogyny and sexism countless times throughout my life. In many cases these instances were explicitly stated to be actions or comments that the perpetrator based on my being female. In other instances I observed that I was being treated differently and less favourably than my male sibling, fellow student, colleague, fellow patient etc. Sexism and misogyny have had major detrimental impacts on my life, career and health. I know many other women for whom that has been equally true or much, much worse than my experiences.

Women can often assess correctly that they are experiencing negative actions or words that would not be applied to a male in a parallel situation. That needs to be acknowledged as a problem.

Males responding to statement of, and research on, the problems of sexism and misogyny, with 'men have problems too' can come across as denial and belittling of those women's experiences.

If the paper was about the experiences of racism and only included people from minority ethnic groups in the study, I don’t think it would be okay for people from the majority ethnic group in that country to respond with 'my ethnic group have problems too.'

All forms of discrimination need to be aired, acknowledged and dealt with.

 

[rvallee]

The same can be true of the Australia part. This is the specific experience in Australia, but the same happens everywhere because the common factor is medicine and medical culture. Which is the real underlying issue. There are differences in how it's expressed, but dismissing patients, medicine simply having never improved on the fundamentals of medicine when their technology isn't advanced enough, ends up the same everywhere, no matter how it plays out.

In the end what this reflects here is technically illegal. It's denial of medical care for arbitrary reasons and a chronic mismatch between need and supply in a fully monopolistic process that is all top-down and blind to everything not happening in their immediate environment. If that didn't exist, if that wasn't normal and widespread, the specifics of how discrimination plays out would be very different. If the rights were actual rights and the duties were actual duties, this wouldn't be happening, whatever is used to justify it.

This is the essence of rights and discrimination. If it's allowed for one group, hell even for one person, then it can happen to everyone. It should never be happening at all. But despite massive evidence like this, it's the combination of lack of interest/motivation and the lack of accountability that keep it going. That's how things become so dysfunctional that one of the main factors of discrimination applies to half the damn population. Especially since it was built this way. Medicine simply never really reformed itself from its pre-science roots, whereas most industries are relatively new and so don't have that awful baggage.

The canary in the coalmine is basically the first warning sign. Half the population being subject to systemic discrimination is basically the entire mine exploding non-stop as warning signals go. It's genuinely hard to build a worse failure than specifically failing half the population, especially for such dumb reasons as a history of brute force subjugation. However, rights are local and vary a lot, while medicine is transnational, so itself isn't really subject to any specific obligations that they can't decide to simply ignore, or simply as a matter of tradition.

Because women's rights in Australia are far better than the world average. So this is just about the best case scenario. This. Is. The best case scenario. And only the patients see any problem with that. Because we are not represented, we are managed from above. This is what needs to change.

 

[Andy]

I’m definitely not saying sexism and misogyny don’t exist. I’m saying the methodology is far from ideal in terms of rigorously ascertaining which elements of the experiences relate to gender/(institutionalised) sexism/misogyny and which are experiences both men and women with the conditions discussed experience.

So you are not confirming your opinion on whether the women interviewed in the study are wrong or not then.

Not sure what is so hard to understand here. This paper is about the experiences of women. It is not attempting to discover if the experiences of the women interviewed are also experienced by men or not, and insisting that it should gives the impression, at least to me, that you are attempting to diminish the validity of the findings.

 

[Milo]

I’m definitely not saying sexism and misogyny don’t exist. I’m saying the methodology is far from ideal in terms of rigorously ascertaining which elements of the experiences relate to gender/(institutionalised) sexism/misogyny and which are experiences both men and women with the conditions discussed experience.

So you are not confirming your opinion on whether the women interviewed in the study are wrong or not then.

Not sure what is so hard to understand here. This paper is about the experiences of women. It is not attempting to discover if the experiences of the women interviewed are also experienced by men or not, and insisting that it should gives the impression, at least to me, that you are attempting to diminish the validity of the findings.

This is a a qualitative study of the experiences in health care of 20 women. No more than that. It is meant in my view as a preliminary and exploratory study.

 

[Haveyoutriedyoga]

OK, fair enough. I will just say this one further point and then shut up.

I have experienced misogyny and sexism countless times throughout my life. In many cases these instances were explicitly stated to be actions or comments that the perpetrator based on my being female. In other instances I observed that I was being treated differently and less favourably than my male sibling, fellow student, colleague, fellow patient etc. Sexism and misogyny have had major detrimental impacts on my life, career and health. I know many other women for whom that has been equally true or much, much worse than my experiences.

Women can often assess correctly that they are experiencing negative actions or words that would not be applied to a male in a parallel situation. That needs to be acknowledged as a problem.

Males responding to statement of, and research on, the problems of sexism and misogyny, with 'men have problems too' can come across as denial and belittling of those women's experiences.

If the paper was about the experiences of racism and only included people from minority ethnic groups in the study, I don’t think it would be okay for people from the majority ethnic group in that country to respond with 'my ethnic group have problems too.'

All forms of discrimination need to be aired, acknowledged and dealt with.

Here here!

 

[SNT Gatchaman]

Here here!

As an ironic aside, the UK-derived phrase "hear, hear!" also has sexist origins. From Grammarly —

The phrase hear, hear seems to have come into existence as an abbreviation of the phrase hear him, hear him, which was well-established in Parliament in the late seventeenth century. The UK Parliament prides itself on its lively debates, and saying “hear him, hear him” was a way to draw attention to what a person was saying. And in case you were wondering, there was no “hear her, hear her” variation—the first female MP was elected in the twentieth century. Sometime during the eighteenth century hear him, hear him acquired its short form, hear, hear, and that form is still used today.

 

[Sean]

This study is useful in its own right. But I agree with Dolphin that it would have been more useful if it also had a male comparison group.

There are two different things that need to be assessed: Do females feel unsafe going to a doctor? Is this different from how males feel?

The study only looked at the first of those. But how to respond to that also depends on the answer to the second question.

There are a bunch of other possible variables that would be useful to clarify too, like ethnicity, age, socio-economic status, etc.

 

[Andy]

But I agree with Dolphin that it would have been more useful if it also had a male comparison group.

Would it? Given that, again, the focus of this study was on the lived experience of women, there seems to me no need to include the lived experience of men. In addition, I believe it is pretty well established that it is women who are overwhelmingly diagnosed with the type of chronic conditions that featured in this study; we are seeing something in the region of 80% of participants in DecodeME are female. So I don't follow why the male voice needs to be included; this study confirms that, yet again, women on average have a crap experience with healthcare so lets improve things for them.