The wilderness of medically invisible disability

Disbelief and disregard in relation to medicine, chronic illness and disability

This video, with transcript below, was part of a webinar held by Liverpool University on 24th May 2022.

Transcript

Hi, I’m Catherine Hale. I’m the Founder and Director of Chronic Illness Inclusion. My colleague Alison and myself are very excited to be embarking on a two-year research project, a collaboration with Bethan Evans at Liverpool University and other colleagues. My colleague Alison is going to talk you through the research on healthcare experiences of women with chronic illness, chronic pain and other energy limiting conditions.

This research was the catalyst for the project that we’re going to be embarking on. But first I want to give you some background on why this research was so important to our community. So the title of our talk, “The wilderness of medically unexplained, [sorry] medically invisible disability” is taken from an article in the British Medical Journal by Lisa Steen in 2016 and her article was called “The wilderness of the medically unexplained”.

Now, Lisa was a GP and a trainee psychiatrist who developed symptoms of a rare cancer that went undetected for a long time. She had a bewildering array of symptoms that weren’t explained by standard diagnostic tests and her symptoms were diagnosed as health anxiety. Sadly her cancer was diagnosed too late to treat and she died shortly after writing the article. Her article is about her experience of what she calls this “wilderness” of having physical symptoms that she was sure had an organic cause but that were doubted and dismissed by health professionals. And she describes conversations with fellow doctors as “feeling like a goldfish with no voice”. She writes of watching doctor’s faces glaze over at her multitude of symptoms and writes of how she felt angry at the way her colleagues looked at her differently to before.

Her article had a profound impact on me because I felt, I feel, that what she acquired was a stigma, a form of stigma. As her symptoms were labeled as medically unexplained and put down to health anxiety it seems that her social status profoundly changed. She went from having the full authority of medical training and practice to being seen as an unreliable witness and having her voice shut down.

This stigma is something that I’ve lived with. The way it works is that you believe that there’s something about yourself or your disease that makes you less valid, less credible if you like, as a person. That makes you feel ashamed. The article however taught me that there’s nothing inherently shameful about us or about our diseases and I’ve understood from reading the sociologist Imogen Tyler’s work on Stigma that stigma is a form of oppression that’s done to us, imposed on us, in a relationship of inequality. In this case the inequality is around who has the authority to know things about our bodies, diseases and disability within medicine. That authority is absolute and it admits no possibility of failure so when our illness or impairment can’t be detected by lab tests a kind of flawed logic kicks in that says it doesn’t exist and that absolutist authority of what’s been referred to as the medical gaze is interwoven, as we know, with patriarchy and also with racism.

So the term “Medically Unexplained Symptoms” is used to define that which can’t be captured by the medical gaze. But this term – MUS – is a euphemism […] and rather than meaning that we don’t know; there may be something we haven’t found or even that we don’t yet know enough about, instead MUS is code for “psychosomatic” and all the variants of that term like conversion disorder, somatization disorder, have evolved out of the good old-fashioned Freudian notion of hysteria.

So MUS functions as a stigmatizing label. It’s a sleight of hand way of condemning our testimony as untrustworthy. It tells medical professionals between them that we shouldn’t be believed.

The stigma of Medically Unexplained Symptoms happens when your disease isn’t understood, like mine, or when it is a “legitimate” disease that is understood by medicine but may be hard to detect like Lisa Steen’s was.

So how does this relate to the work of Chronic Illness Inclusion? Well, our previous research is all about uncovering socially constructed barriers facing people with chronic illness following the mould of the social model of disability. To put it differently, our work is about identifying ableism and how ableism shows up for people with chronic illness and energy limiting conditions and our research found that ableism manifests differently for us as it does with other groups of disabled people.

For example, for many disabled people, ableism is about being presumed to be generally incapable. For us, on the other hand, it tends to be about being suspected of exaggerating or faking when we talk about our limitations. Ableism, for people chronic illness, revolves less around pity or being held up as inspiration, or inspiration porn, but rather about being urged to try harder, exercise more, think positively. It’s about being held responsible for our illness or disability.

Ableist attitudes for people with chronic illness are not so much about being “othered” because we look different, but about hostility when we identify ourselves as disabled.

So, in short, ableism towards people with energy limiting conditions and chronic illness shows up as disbelief and as gatekeeping over who gets to call themselves disabled. And what I’m proposing is that this oppression doesn’t just relate to the fact that our disabilities or impairment are invisible, or hidden, or less apparent. It’s about the specific fact that they’re medically invisible. And I first read that phrase “medically invisible disability” in writing by Alex Haagaard, so I want to give credit to reading it there first. But it seems to me that the label and the logic of Medically Unexplained Symptoms plays a huge role in creating and perpetuating this form of ableism that we experience.

Now if you’ve not come across this stigma of medically invisible disability before, the evidence of the trauma that it creates is all over social media. You only have to look up the hashtags like #NEISvoid which stands for No End In Sight Void, by Brianne Benness, #medicalgaslighting or in fact #MedTraumaChat by Alex Haagaard to come across examples, and people talking about the impact of this on their lives.

So last year when the Department of Health and Social Care released its consultation on experiences of healthcare among women, we took this as an opportunity to gather formal evidence. And Alison’s going to be sharing the findings specifically on the impact that systemic disbelief has on our lives.

But I want to finish with a call to action. Because what I want to address with this wider project that we’re going on to do is, What can we do as a community of activists and academics to address the injustice and challenge the stigma of Medically Unexplained Symptoms? What channels are there for having our voice heard? For telling of the harm that some of us have experienced from inappropriate treatments that come from the MUS pathway. And telling of the impact that systemic disbelief has on ourselves and our lives.

At the moment I see no channels. For all that the NHS talks about patient-centered medicine, patient involvement in service design or promoting expert patients and partnerships of care, these pathways for voice and influence only exist if you already have a verified disease.

We’re only allowed to be “expert patients” once medical science has put its stamp of legitimacy on our experience. If you are, like many of us are, in this wilderness of medically invisible disability you have no voice there are no pathways for partnership or co-production.

And this project is about breaking that silence and challenging the idea that our testimony is untrustworthy. Challenging the disbelief and the gatekeeping of what is, and is not, a disability.

And the recent pronouncement by the Equality and Human Rights Council [Commission] in the UK on Twitter, that Long Covid may not be deemed to be a disability, shows how urgent this challenge is. And I hope you’ll join us on the 24th of May and beyond. And now I’m going to hand over to Alison to continue her part of the talk..

Thank you Catherine. As Catherine says my name is Alison Allam and i’ve been involved in the Chronic Illness Inclusion Project for several years. I’m also somebody who lives with long-term multiple health conditions, primarily energy impairment being one of the key issues that I face on a day-to-day basis. So I’m here today to talk about the findings of the survey that we conducted in response to the Department of Health and Social Care’s call for evidence about women’s health and well-being in England.

I’m not going to talk about all the findings. Rather, I’m going to focus on participants’ experiences of distrust and disbelief.

So, in terms of introduction, the Chronic Illness Inclusion Project conducted an online survey in April 2021. We carried this out in response to the Department of Health and Social Care’s inquiry into women’s health and well-being in England, and the survey questions were broadly based on the DHSC’s consultation questions.

So in terms of the demographic characteristics, it was completed by 800, well almost 800, disabled women and non-binary people in England living with chronic physical illness and we had a good response in terms of most respondents were living with energy limiting conditions. A range of impairments were included, conditions such as ME/CFS, fibromyalgia, Ehler’s Danlos, POTS and Long Covid. We covered a good age range of ages from 18 to 64. So most were working age adults but we also had 10 at over 65. A wide geographical spread across regions of England… one of the limitations, and it is a significant limitation, and it’s something that we really want to approach with any future work that we do is that 90% of respondents were White. So obviously we didn’t really achieve good ethnical diversity.

So in terms of the distrust and disbelief, the survey asked “Has there been any incidences where you felt you were not listened to by a health or social care professional?” 40% of respondents felt very often that their accounts about how their condition affects them was not believed. A further 21% said they experience disbelief often. So 60 percent felt that very often or often that their account of their condition, how it affects them, was not believed by the professionals and this experience of disbelief transcends both primary care and also and crosses the divide between health and social care.

80 percent noted that these experience were based with General Practitioners, with another large group citing specialist doctors and a smaller group citing social care professionals

So in terms of the impact of these experiences of disbelief and distrust, diagnostic delay was a key impact. Most respondents experienced delay, with 30 percent of respondents having to wait 10 years or more for a diagnosis. Misdiagnosis was also a key. Physical symptoms were often attributed to psychological distress or social factors without evidence of a mental health condition and this diagnostic delay and misdiagnosis often resulted in inappropriate treatments being given. For example, talking therapy, CBT, or behavioral therapy i.e exercise or graded exercise for the treatment of physical symptoms such as pain and fatigue. And, perhaps not surprisingly, the relationships with health and social care professionals were significantly impacted.

Many talked about the fear and dread of interacting with professionals in case of new symptoms or increased needs. They avoided healthcare or kept their interactions to a minimum and struggled with trust.

But the impact wasn’t just around their interactions with health and social care professions. It impacted on many other aspects of their life, for example, self-esteem, confidence and well-being. Many experienced distress and anger, doubting and blaming themselves and developing anxiety in response to this disbelief. It undermined their ability to advocate for themselves in other areas of life.

Secondly, it impacted on relationships with family and all close friends. And partners are often less willing to provide care and unconditional support, sometimes causing relationships to break down. Disbelief caused families members to blame the patient for their condition and examples were given that they were just told that they were lacking willpower and they could get better if they wanted to get better. Also that they’re staying away from family members or friends was too exhausting to have to negotiate this um sense of distrust and disbelief, and also it was difficult trusting anyone but close friends who believed them and this led to wider social isolation.

It also impacted unemployment relationships. There was talk about micro aggressions of disbelief from co-workers that are described as exhausting and distressing. Employers have a narrow view of disability, which creates an additional obstacle to seeking reasonable adjustments and one participant said “They don’t understand energy limiting conditions and chronic pain. I feel like I have to regularly justify and prove my health conditions.”

It also impacted on disability identity. The disbelief is internalized, as Catherine has alluded to, and prevents people from identifying and knowing their rights as disabled women.

So in terms of my concluding thoughts, the number of respondents testifies to the urgent need to listen and respond to these experiences. In a survey that generated over 800 respondents in simply a month, it just shows just how big a population there is out there.

We have been fortunate to receive a small grant from the British Academy and this will enable us, as Chronic Illness Inclusion, and also with our colleagues at Liverpool University, to carry out a thematic analysis of the hundreds of open-ended responses collected, which were out of scope of the DHSC’s inquiry.

And finally I’ve just provided two references. The first is to Lisa’s paper which Catherine talked about, and which this title of this presentation is taken from, and that’s there. And secondly, for those who are interested, there is a link to the full report that we submitted to Department of Health and Social Care. So Catherine and I would just like to say thank you very much for listening and we look forward to being involved with you in the future. Thank you.