Before being diagnosed with disability, some people with invisible disability experience not having their symptoms believed or taken seriously by their GPs which delays their diagnosis. Why is this happening?
By Stephanie Mantilla
“Hopeless. Sad. Angry.”
This is how Cecilie, 24, who has depression, anxiety, dermatitis, bulimia and low blood pressure described not having her symptoms believed by her GPs, before being diagnosed with her invisible disabilities, made her feel.
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Cecilie, 24, has seen over 20 GPs in hopes of finding one that would believe her pain and take her symptoms seriously.
Like Cecilie, a number of people with invisible disability, before being diagnosed, have experienced what it’s like to go to their local GP and have their symptoms brushed off as something seemingly trivial, such as stress. Or, even worse, told that it’s ‘all in their head’.
Not having their pain believed, leaves them with three options:
- Convince themselves that it is all in their head, even though it’s not.
- Try to convince their GP that their pain is real (often by gathering proof).
- Find a new and hopefully more understanding GP.
Each of these options are timely and unnecessarily prolong the pain and discrimination that people with invisible disability may experience. Cecilie remembers going through each of these options far too well and the “frustration” that she says accompanies each of them. She has been to over 20 GPs in hopes of finding the elusive ‘more understanding’ GP, but is yet to find them.
The medical-health industry is one of the most powerful and influential industries today, in which, as Australian Medical Association President Dr Michael Gannon says, “GPs are a critical part.” Recent statistics by the Australian Bureau of Statistics show that 75% of Australians felt that their GP “always listened carefully to them” and 76% reported that they “always spent enough time with them.” Despite these reassuring results, which suggest that many GPs are likely not guilty of not believing or not taking seriously people with invisible disability’s pain before diagnosis, it’s hard to ignore that close to a quarter of people haven’t had the same experience with GPs.
Females in particular were less satisfied with GPs, with 9.1% of them responding that they were sometimes, rarely or never listened to by GPs and 10% of them responding that they were sometimes, rarely or never shown respect by GPs. Although there are currently no available statistics for invisible disability prevalence by gender in Australia, chronic diseases, many of which are invisible disabilities, are more prevalent in females (52%) than males (48%), with females also more likely to have two or more chronic diseases. In light of this, it’s important to acknowledge that GPs not believing people’s pain is a real issue that is affecting real people’s lives. And it would seem, that it is statistically more likely to affect females’ lives, like Cecilie’s.
This issue has escalated to the point, that a number of people with invisible disability have started to speak out across a variety of different media forms, in an attempt to raise awareness. One need only google ‘My GP didn’t believe me‘ to find a myriad of forums, blogs and news articles on the issue.
So, why don’t GPs always believe people with invisible disability’s pain?
Perhaps part of the answer is surprisingly obvious. Because it’s not visible.
The opposite of able-bodied is disabled, right? Wrong.
The belief that the polar opposite of ‘disabled’ is ‘able-bodied,’ couldn’t be more wrong. However, the misconception has become so widespread that it has even created confusion in the medical industry. This is not to say that every time that a doctor doesn’t diagnosis an invisible disability immediately that they subscribe to this idea. But it is worth keeping in mind that historically, within the medical field, the disabled body has been seen as ‘pathological’ whereas the able body has been seen as ‘normal.’ In other words, the disabled body has been seen as a medical problem that needs to be cured, whereas the able body has not.
As disability theorist Bradley Lewis briefly explains, in his essay A Mad Fight: Psychiatry and Disability Activism, this stereotype is so extensive that it is even reflected in the way doctors practice medicine, which is problematic to say the least. An example of this would be the biomedical approach that the field has been known (and widely criticised) for taking, which focuses on fixing the body rather than healing the person. The problem being that a person is much more than just their body.
Criticism of medical practitioners being too ‘cold and clinical’ have led to the medical field slowly changing its approach by encouraging the view that: the person is not simply a body that needs to be fixed and that their experiences also need to be valued and considered. However, with there being stories appearing about people with invisible disability not having their pain believed by their GPs, it would seem that some doctors are still a long way off truly valuing the person’s experience in the same way that they value the physical body when it comes to diagnosing disability.
GPs: The ‘fixers’ of the disabled body
Emory University Professor of English and Bioethics, Rosemarie Garland-Thomson sheds some light onto why doctors may value the physical body so much, in her book Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. She explains that, over time, society has created a set of bodily rules and standards that guide what we expect an ‘able’ body to be able to do and what it should look like. Bodies that don’t meet these physical expectations are instantly labelled, what many of us consider the opposite of able-bodied: ‘disabled.’
“People who cannot lift three hundred pounds are able-bodied, whereas those who cannot lift fifty pounds are disabled.”
Because our society values the ‘able bodies’ that fit within these imaginary rules and standards that it’s created, it’s led to a desire to ‘fix’ the ‘deviant’ bodies that don’t. This is where GPs and the entire medical profession have come in. From very early on, they were assigned the task of ‘fixing’ disabled bodies and turning them into able bodies, which is why disability has historically been considered primarily a ‘medical problem’. However, this confused and old-fashioned view of needing to ‘fix’ the bodies that appear physically different seems to not yet have been completely abandoned by the medical profession, with disability theorists, like Lewis, noting that the association between being able-bodied and ‘normal’ and disabled and ‘needing’ a medical cure remains in the field.
However, ‘disabled bodies’ have been seen as more than just a medical problem, as historically people with physical disability have been largely punished through exclusion and discrimination because of their different bodies. This is perhaps also why throughout history, disability has been strongly associated with physical disability rather than invisible disability. In a society that has been unaccepting of people with disability and seen them as ‘medical problems,’ the choice of passing as able-bodied is something that was likely seen as a better option at the time.
To truly understand why disability has been, and continues to be, so strongly linked with the physical body, it is necessary to look at the history of disability.
The body’s leading role
The body’s leading role in disability history is key to why many of us, including some medical professionals, associate disability with the idea of the visibly injured body. It’s also part of the reason why many of us believe the opposite of disabled is able-bodied. The following timeline highlights some important moments in disability history and how important the body has been in the way people with disability have been treated.
Physical disability has gone from being seen as an ‘extraordinary’ anomaly to a medical problem that was punished and now, whether we realise it or not, it continues to be a fascinating part of everyday life.
The history of physical disability shows us how important the visibly injured body has been when it’s come to how we have understood and continue to understand disability. Despite what history might suggest, it’s important to keep in mind that over 90% of Australians with disability have invisible disability. So associating disability with visibility, even if done unintentionally, is a dangerous shortcut, especially for GPs who we rely upon for a proper medical diagnosis.
A medical diagnosis isn’t a cure, but it cures a lot
It goes without saying that the medical diagnosis plays an important role for a person with invisible disability, but not only in terms of treating and reducing their pain. For many people with invisible disability, like Cecilie, a medical diagnosis plays an important role in other people, and even institutions such as universities, believing their pain and offering them support. With some people with invisible disability facing discrimination because they ‘don’t appear to have disability,’ an official diagnosis is also crucial to lowering some of this discriminatory behaviour.
GPs not believing people with invisible disability’s symptoms and pain only adds to the frustration and discrimination that people with invisible disability face. Not to mention, the way ‘not knowing’ the cause of the symptoms can make a person feel and the toll it can take on their self-esteem. As Cecilie recalls: “My self-esteem hit rock-bottom. I felt like I wasn’t believed and that it must be in my own head.”
Please, just listen to my story
“To absorb them, to interpret them, to honour them, and then to be moved by them and to be moved by them to action.”
Although this is by no means a complete solution to the issue, but by more doctors simply listening and valuing people’s stories and their experiences as much as their physical body, the medical practice could be greatly improved. Especially, for people with invisible disability who often only have their story to share.
Disclaimer: Although this article does not intend to take away from the hard work of many GPs, it does aim to shed some light on how a critical part of the healthcare system could improve.
This project received funding from the Harold and Gwenneth Harris Endowment for Medical Humanities, Harris Fellowship 2017, reference HF-2017-6.