Living With a Stigmatized Disease

Last updated: October 2022

Living with a stigmatized disease can significantly affect the quality of life and lead to loss of income, financial instability, housing insecurity, isolation, and depression. Stigma increases the disease burden because it leads to a lack of testing, treatment, and primary care.

I was diagnosed in 1992 when they had just started testing for hep C in the community physician clinics. When my results returned positive, the medical professionals were naive about the disease's treatment course or etiology.

The statement was, "all we know is it is a slowly progressing disease," so I was 'shelved' and treated like it was no big deal. Stigma is an essential consideration in any examination of HCV.

Living with hepatitis C and facing stigma

The experience of stigma and discrimination has been a defining feature for those living with HCV and is inextricably linked to its association with injection drug use. People can be stigmatized because of HCV and IV drug use (which defies social norms).

The stigma received by people who inject drugs can persist even when drug use is reduced or ceased. As with other stigmatized health conditions, the stigmatized status of HCV has hurt the prevention of its transmission, treatment-seeking, uptake, and adherence.

The quality of life of people living with hep C can have concerns about being stigmatized by family members or intimate partners by the general public. 

Discrimination in medical care settings

Most notably via healthcare settings. From what I have been told, the healthcare setting is the most commonly reported site for people with HCV to experience stigma.

For our purposes, the healthcare setting represents a particularly important context of culture and power to explore HCV-related stigma. The literature documents the roles that “enacted” and “felt” stigma play in undermining public health and clinical efforts to engage those living with HCV in care and treatment, as people will resist engaging with health services to avoid future experiences of stigma.  

Raising and prioritizing the profile and understanding stigma and its central role in patient decision-making about “if and how” to engage in HCV care. Similarly, the role of trust in building and maintaining effective relationships between client, health professional, and health system.

We need to acknowledge the potential disconnect between the lived experience of HCV and the assumptions of health professionals and policymakers. It may be that the centrality of stigma and mistrust is underestimated and receives little attention when considering how best to engage with, and attract, people living with HCV.

Drug use and being marginalized

Developing genuine partnerships with people living with HCV and consulting them on the design and operation of health services may be a first step toward establishing, modifying, or reforming health services to better address stigma as a barrier to HCV. There is an ongoing public health crisis regarding whether to treat someone in active addiction or retreat if they are reinfected. 

For many reasons, the goal is for people to stop injecting drugs altogether. But if that isn’t possible, then using sterile equipment — available through needle exchanges, safe injection sites, and so on — is an effective way to prevent transmission.

People who continue to use should enroll in syringe service programs and maybe utilize MAT services for opioid use disorders those injecting opioids. These alternatives, especially in combination, have been demonstrated to be effective in reducing the transmission of HCV in people who inject drugs.

As a recovering addict and a Certified Addiction Specialist working in the field for over 35 years, conquering the task of breaking through the barriers of shame and stigma has been my number one priority.

Living with the stigma of “living out loud “ that I was an IV user has been my imprint in the good fight. I also was in nursing and could have been exposed during my career, but I know most likely it was my IV drug use.

Would I have been medically treated with more compassion and positive regard? Most likely.

An addict is self-medicating, usually based on unresolved trauma. Collateral damage may include hep C and HIV.

Shame is a stop-gap to obtaining treatment. We must encourage and display positive regard, respect, and compassion, or our doors remain partially closed to the most vulnerable population.

Furthermore, may we not be guilty of contributing to a trauma-vulnerable population being the norm by denying treatment?   

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