Step Forward: Fight Stigma
Written by: Marcus Shaw – featuring Rhys Ross
Step Forward: Fight Stigma was developed to increase awareness of stigma and discrimination faced by people living with HIV whilst also normalising HIV as a chronic health condition (a condition that is long lasting that can impact quality of life). Stigma and discrimination have been recognised as major barriers to accessing health services and adhering to treatment for some time, leading to less desirable health outcomes and quality of life. Breaking the cycle of stigma and discrimination is crucial to support the good health and wellbeing of people living with HIV.
While medication and treatment for HIV have significantly progressed since the beginning of the AIDS/HIV epidemic, social acceptance and understanding continue to lag. Stigma and discrimination remain a core concern for people living with HIV and report poor treatment for the general population, medical professionals and other human service staff remain misinformed and may refer to outdated or incorrect HIV data, research or evidence. Stigma has been well-recognised as a key barrier for people to support their health and wellbeing. An impact on medication adherence, accessing support services and health seeking behaviours can result in a reduction in positive health outcomes. Ongoing negative experiences for PLHIV continue to perpetuate the narrative that HIV is problematic – for the individual this results in increased stress, shame, self-stigma and ultimately resulting in a diminished sense of self-worth and poor quality of life. With a reduced value of self, we begin to tolerate and accept what is generally considered unacceptable standards of treatment, we begin to adapt our behaviours and hide our stories, we begin to pull back from supports and services, we begin withdrawing from society.
One of the participants from the campaign, Rhys, shares his thoughts:
“Living with HIV has been a challenging journey at times, often accompanied by prejudice, stigma and discrimination. Since my diagnosis in 2016, I have encountered both positive and negative experiences in my interactions with healthcare professionals. Professional stigma carries a greater impact than social stigma due to the inherent trust we place in health practitioners to provide compassionate care – clinicians hold a lot of power in their role. As a patient, you believe that what the doctor tells you is the truth and you do not expect them to respond to you through a lens of prejudice. You trust that they are ethical and patient centered. Consequently, when this trust is breached, the emotional toll is heightened, intensifying the negative experience. I have been fortunate enough to meet doctors who have treated me with empathy, respect, and provided me with comprehensive care. Their understanding and non-judgmental approach made a significant difference in my overall wellbeing. However, I have also faced instances where healthcare providers have displayed ignorance and prejudice towards my HIV status; which left me feeling marginalised and overall hesitant to interact with clinicians and seek medical help. It is crucial for healthcare professionals to recognise the impact of their words and actions, as their support can empower individuals living with HIV to lead fulfilling lives and break free from the chains of stigma.
We see the influence of stigma and discrimination on every level – individual, interpersonal, organisational, community, national and international. When we see stigmatising rhetoric, public policy, legislation and law at the broadest level of our society, the ability to challenge this is extremely difficult. However, if we work within our scope of control, there will always be things that can be changed.
Step Forward: Fight Stigma, highlights that on an individual level, people want to create change and can create change – it may be a lack of knowledge or experience that creates division, when we lean into those gaps, we begin to listen, understand and support.
Due to continuing medical advances in treatment, HIV is considered a chronic health condition, with PLHIV being able to live, age and function whilst managing their condition. HIV, like so many chronic health conditions, requires ongoing medical supportand intervention, and may cause limitations in some functions or daily tasks. This campaign sees HIV compared to a range of other conditions, with the aim to normaliseHIV as a chronic condition while also highlighting the amount of stigma PLHIV face compared to other conditions. While different conditions may have varying levels of stigma and discrimination attached to them, it is the normalisation of things such as cancer, arthritis, asthma and diabetes in the mainstream that have allowed for a reduction in associated prejudice. In more recent times, this can be seen with certain mental health conditions – an increased awareness and openness has allowed for a more understanding and inclusive society. Hopefully, this is a change we can see with HIV.”
Please visit the Step Forward: Fight Stigma landing page to access additional campaign resources to assist in continuing to fight stigma.