Article: Shame, Stigma and “Unexplained” Symptoms

[John Mac]

Katharine Cheston discusses the isolation, disbelief and stigma experienced by people with poorly understood medical conditions

Autobiographical accounts of illness tend to follow a similar script. Typically, they open with an interruption: new symptoms render the normal abnormal, precluding what had previously been taken for granted. These symptoms are recounted to a healthcare professional: tests are ordered, examinations requested, referrals made – each producing pieces of a diagnostic puzzle to be slotted together by specialists.
Eventually, a diagnosis materialises, functioning both as the key that unlocks a treatment plan, as well as the lens through which the ill person – and, in turn, readers of their illness tale – makes sense of what is to come.

But what if this diagnostic puzzle is not solved? What happens when symptoms persist unabated – fevers continue to flare, pain still shoots and stabs – but tests repeatedly return normal results; when the body remains an opaque mystery, its disease and dysfunction invisible to presently-available medical science? What is it like to experience severe symptoms for which a distinct diagnostic biomarker cannot yet be found?

This situation is more common than one might expect – or, indeed, hope. It is thought that between 25-50% of all GP consultations ‘concern symptoms that are not medically explained’ (Verhaak 2006), while ‘a third of new referrals to specialist medical clinics’ will not result in the definitive diagnosis that patients and professionals alike so desire (Burton 2010).
Although most of these symptoms are transient, ‘approximately 2% of adults experience persistent or recurrent symptoms which are associated with increased primary care consulting and referral to secondary care’ (Morton 2017).
Diagnostic labels such as Medically Unexplained (Physical) Symptoms (MUS/MUPS) or Persistent Physical Symptoms (PPS) are often employed in these circumstances.
Alongside symptom-based categories, such as chronic back pain, these labels also encompass – controversially – symptom ‘clusters’ that include poorly-understood conditions such as irritable bowel syndrome and chronic fatigue syndrome, for which there are growing bodies of biomedical evidence (Saito 2011, Padhy 2015; Saha 2019, Mueller 2020, Sweetman 2019). Debates continue regarding the usefulness and appropriateness of these terms, but it is certainly clear that diagnostic labels such as MUS reveal nothing of the immense physical suffering that many with these diagnoses endure.
For example, it might be surprising for many to learn that successive studies have shown that, on average, patients with chronic fatigue syndrome experience a significantly lower quality of life and are more functionally impaired than patients with diseases such as cancer, heart disease, and multiple sclerosis (Hvidberg 2015, Nacul 2011, Komaroff 1996).

My bolding

https://thepolyphony.org/2020/09/29/shame-stigma-and-unexplained-symptoms/

 

[Sean]

What is it like to experience severe symptoms for which a distinct diagnostic biomarker cannot yet be found?

Thank you. That 'yet' is critical to this discussion.

 

[It's M.E. Linda]

https://thepolyphony.org/2020/09/29/shame-stigma-and-unexplained-symptoms/

A later paragraph within the link (my bolding):

Julie Rehmeyer, who lives with the same condition as Wall, appears to share these sentiments, writing that the ‘only thing calling my illness “chronic fatigue syndrome” seemed to add was a stain of stigma, as if the name provided a window into my soul and displayed some moral failing within me’ (2017: 35-36). Clearly, those with so-called “unexplained” symptoms endure not only the misfortune of falling ill, but also the pain of being tainted and stained by stigma – of living not only with a malfunctioning body but also with a ‘spoiled identity’, as Erving Goffman so influentially put it (1990).

Excellent!!


ETA spelling/tidy up

 

[rvallee]

Saw this video last night and it's kind of relevant. It talks of stigma and uses COVID (?) and AIDS as an example, even though almost all the COVID-related examples are people using COVID as an excuse for political persecution, rather than actual stigma of the disease.

What is shows is how little has changed in this regard because of how stigma and discrimination work, mainly by being denied while it exists. We speak of the stigma of AIDS and leprosy (used as an example) mostly because of past behavior, but not of the currently stigmatized, systematically discriminated, diseases that continue the cycle of violence.

Because by far the most stigmatized diseases right now are the chronic illnesses, us, fibromyalgia, dysautonomia and all the other "fake diseases" that medicine loves to hate. The stigma against these diseases, stemming from medicine itself rather than culture, is at least as heavy as the worst of the AIDS crisis, and yet it is entirely unvoiced, because that's how stigma works: the more consequential it is, the more it is denied. Especially with people having built their career on creating, then maintaining, the stigma, facing career ruin once it ends.

This is why this cycle never ends. Because it's never obvious while it's happening. There are always excuses, platitudes, used to justify why 1) there is no stigma, but also 2) the stigma is good and justified. After all, we have a "laughable" illness, so clearly stigma is warranted. Similar dynamics play out in segregated societies that practice forms of supremacy between groups. It does not officially exist, but there are endless good reasons why it must be maintained.

This stigma, and overt discrimination, has well-documented evidence, is massively harmful and serves no actual purpose. But it will be defended with vigor and purpose while it is happening, because it will not be recognized as a bad thing while it is happening, as it was not recognized in the examples of AIDS and leprosy. It was good, there were reasons. Bad reasons, but there are always more bad reasons to throw at anyone raising the issue.