The Underbelly Of Stigma
“It is a sad reality that in an atmosphere of ignorance, myths and superstitions abound to the detriment of the society. In those days, many attributed an illness like breast cancer to the workings of wickedness and evil spirits, adding a layer of stigma to already traumatic circumstances. Even with well-educated people like my father (who had spent over a decade in the UK) subconsciously bought into the falsehood, indirectly blaming the patient for some perceived wrongdoing which had brought on such a dreadful disease”.
- Excerpt from Navigating Your New Normal: A Road Map For Life Fulfilment After Trauma.
The above excerpt from my book describes my first experience of stigma in relation to illness. For context, this took place in Nigeria over three decades ago when there was a lack of understanding about illnesses such as cancer, mental illness or disability of any kind. At the time, I was a 13-year-old who had the responsibility of looking after my mum after her breast cancer diagnosis as well as pick up the slack of housekeeping.
I vividly remember that from the get-go, my mum’s diagnosis was viewed as something to be ashamed of and therefore hidden as much as possible. The secrecy, fear and anxiety were huge burdens on my siblings and I with no avenue for support. For my mum as the patient, her acute pain went beyond the physical. I remember thinking as a teenager that surely this was not the way to live, and I determined to choose differently when I was older.
You might be wondering why I have chosen to talk about one of the most traumatic experiences of my childhood. It is because the detrimental impact of stigma around certain illnesses is still blighting the lives of many denying them access to support, compassion and in a lot of cases, timely treatment to adequately manage their conditions.
You would be forgiven that in this age of technological advancement and proliferation of information, shaming people for medical conditions that they did not choose would be a thing of the past. Alas, that is not the case. The manifestations of stigma might look different today, but the impact is just as damaging to patients and their loved ones. Whether we’re talking about a cancer patient here in the UK who is shunned by relatives or someone with epilepsy in another country told that they are to blame for their medical condition, the pain that people feel are exacerbated leading to isolation and shame.
As I referred to in my book, stigma is not a respecter of educational attainment or economic status. This is because it is deeply rooted in cultural norms and perceptions of what is deemed as acceptable illness versus what is not. Against this backdrop, it is vital for healthcare professionals to have an insight into its impact on the patients they care for. You cannot separate their environment and lived circumstances from the way they choose to deal with their medical conditions.
What drives stigma?
Within the context of health, some of the drivers of stigma include fear and misinformation, cultural norms and values, myths and religious beliefs, silence and secrecy, desire for belonging.
Fear and misinformation
One of the biggest drivers of stigma about illness is fear and misinformation. With illnesses that are not easily understood within a culture, the initial reaction is fear which many do not want to acknowledge because of perceived weakness. They also may not be able to even articulate their feelings having spent a lifetime masking the dread and worry. This then opens the door to misinformation passed down through stories and narratives that reinforce untruths. For example, there were stories I heard before my mum’s breast cancer diagnosis attributing the illness to the work of evil spirits. These stories were repeated uncritically by many well-educated people like my father, thus showing how insidious stigma can be.
Cultural norms and values
In all cultures there are notions of what is perceived as “normal” versus “abnormal”. Some of these are openly shared whilst others are covert. These of course are subjective and can be difficult to understand by those outside of said culture. However, illnesses that cannot be easily explained or understood are labelled as aberrations and therefore seen as justification for stigmatisation. This then leads to avoidance, pretense or shunning those involved to keep up appearances.
Myths and religious beliefs
In many instances, cultural norms are interwoven with religious beliefs which fuel myths about illnesses like cancer, mental illness, epilepsy or disabilities in general. As noted above, if the cause of a condition is attributed to unseen malevolent forces, it is then deemed a spiritual problem as opposed to a medical one. This then means that the opinions of religious leaders who often have limited understanding of these conditions hold sway over medical advice. As such, those affected might delay seeking treatment or not fully take onboard medical advice. This then leads to poorer life experiences or even untimely death.
Silence and secrecy
One of the things that perpetuate stigma is the code of silence and secrecy fed by shame. I can still remember the instructions I had not to speak to anyone about my mum’s illness and to ensure that she is hidden away in the bedroom before anyone stepped foot in my childhood home. As time went on, my mum got used to it such that anyone knocking on the door would be her cue to leave the living room and retreat to her bedroom not surfacing again until said person had left. Such actions leave a lasting negative imprint reinforcing the notion that breast cancer was something to keep hidden be ashamed of.
Desire for belonging
Within every human being is the desire to belong. This is particularly strong within the communities we call our own. As referenced above, there are explicit and implicit rules or standards for the way things should be or how people should live. In order to remain accepted within these communities, most people do not challenge the set ideas of which stigma is a part thereby perpetuating it. This unfortunately further isolates people with such medical conditions robbing them and their loved ones of much-needed help and support. For the duration of my mum’s illness until her death, this was our experience as a family.
Why this matters for healthcare professionals
It is impossible to deliver equitable, person-centred care without an insight into the lived context of its recipients. Stigma would have already stripped people of dignity, self-worth and sometimes the will to live by the time they encounter most healthcare professionals. Add to the mix the imbalance of power dynamics in the clinical settings and you get people who are unable to take on board treatment requirements nor advocate for themselves.
Rather than view them as uncooperative and difficult, I implore healthcare professionals to seek to understand the reasons for their behaviours then share power with them. By reassuring them that they matter, are deserving of kindness and compassion, this would go a long way in restoring dignity, paving the way for cooperating fully with treatment and self-management instructions.
Within the UK context, let’s not discount people’s lived experiences of interpersonal and institutional racism. It is incumbent healthcare professionals to come alongside patients they see as active allies who support them in advocating for themselves. That goes a long way in restoring dignity and humanity of each person.
It is the right of every person to be treated thus regardless of their medical condition or background.
Dear healthcare professional, I implore you to take this post as a reminder to think differently so that you do not inadvertently exclude people who live with the undue burden of stigma on top the challenges of their medical conditions.