Stigma: Indifference or Discrimination?
We have heard about the stigma associated with hepatitis C, and some of us have experienced it first hand and in real-life. I have written and spoken about how stigma impacted me, and shared some examples of how it has affected people I know and those I have heard from throughout this journey since my own diagnosis years ago.
Editor’s Note: Are you afraid to talk about your hepatitis C? Some people want to learn more about hep C, but also want to keep their diagnosis private. At HepatitisC.net, there are ways to get information and connect with others, without revealing your identity. Click here to learn more about how to talk about hep C anonymously.
Where it comes from is what I want to dig into now, as well as look at the different definitions and a few possible things we can do to shift the discussion and narrative with those people who know very little accurate information. I am talking about the people you may come into contact with in your daily lives.
Indifference is unfortunately common in the medical community, meaning healthcare professionals (workers). This includes primary care doctors and the full range in this group. I have spoken to doctors, lPN’s and RN’s who have no understanding at all about HCV and confuse it with hep b and hep a regularly, and many nurses have said to me they were vaccinated against hep c, in confusion. They are far more indifferent than I would hope; given the number of nurses I have met and know who are living with hep c. They are at risk because of their work, if for no other reason, not to mention the part they play in protecting patients who are in their care.
Discrimination is different and I know we are all guilty of discrimination in some form, whether consciously or not. It can and usually is unfair and hurtful. It can be a destroyer of lives at it’s worst.
The causes are varied as much as we can imagine and not unique to hep c, but with hep c it is based on the stigma of drug use and is inextricably linked to the virus.
I won’t tear into that yet again because we now should all know that this is simply an incorrect view. The data and research suggests otherwise, but most new infections in so-called developed countries are caused by drug use when people share devices like needle/syringes and crack pipes, snorting methods, as well as others down the list.
So how can we work towards a change in the narrative on hep c?
In brief; we can arm ourselves with a few key facts and talk to people about how it is not a death sentence, it is not easily transmitted in daily activities, one cannot be vaccinated for it, and that it is not linked to drug use alone, recognizing the facts, and if it is transmitted in that way it does not give us permission to kick the drug users to the curb and ignore the issues of prevention and support for all people living with and at risk for HCV.
This is just an example of one of my twenty-second elevator speeches when I have an opening. I don’t honestly think many people will do what we do as advocates but simple opportunities will present themselves to you in your life and it doesn’t have to be in an elevator. We have a real chance to help move the dial on the perception of hep c, however brief an encounter is.
It is not many of us who have chosen to disclose our own status with hep c and I get it. It is because of stigma and the fear of being dismissed and discriminated against, and who likes that.
It is your decision to make, after carefully considering the consequences.