Ableism in health and social care
Chronic Illness Inclusion has collected evidence of the trauma that often accompanies living with a poorly understood, contested or under-diagnosed health condition.
This trauma goes beyond the symptoms of disease, or the impact of debilitating symptoms on mental health. It arises from the all-to-common experience of being disbelieved, and having our testimony of illness invalidated within healthcare settings.
We believe that the NHS’ approach to so-called ‘medically unexplained symptoms’ (MUS) confuses poorly understood diseases with symptoms of psychological origin. The MUS framework in UK healthcare institutionalises disbelief and causes healthcare injustice.
Department of Health and Social Care inquiry into Women’s Health
To ensure that our organisational submission reflected the concerns of women with Energy Limiting Chronic Illnesses we launched our own survey. CII collected over 1,000 responses from women living with chronic illness, including those who identify as female or who were born female but now identify differently.
We heard details of the difficulties they have experienced in getting diagnoses, treatment and support. They reflected a culture of disbelief and dismissal. Many of the responses were heartbreaking to read.
Our submission to DHSC reveals the stigma of disbelief in healthcare contexts and the neglect and inequality that come with it, and our report calls for a rethink of the NHS approach to so-called “medically unexplained symptoms”.
Being disbelieved seems to be a rite of passage for so many women with chronic illness and/or chronic pain. These are just a few of the responses to our survey: “Being disbelieved makes you question everything you know about yourself and your conditions and leads into a dystopia which undermines everything in your life.” Read more