Living with Hepatitis C's Stigma of Getting Infected While Doing Bad Things - an Interview

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Interview Report – Preliminary Notes

To begin with, while I’ve finally found time to do the first interview, I don’t mean it to be my final one, I’d like to do at least one or two more sessions with my interview subject. However, even in this first interview I’ve learned several things of value that should be useful to expand upon and helpful in writing the final report. There have been several themes I’ve noticed so far. For one, the idea that Hepatitis C is a disease that is hidden from both onlookers and even the one who has it. Second, that it carries a stigma: as my interviewee said it’s “a disease you get from doing bad things”. Third that the effects of the disease (at least in this case) are not particularly notable, as she claims the disease hasn’t affected her life. Fourth, that despite this apparent lack of effect, knowledge that she has the disease (and knowledge that she can spread it) makes her feel unhealthy; despite physically feeling not too different from before she knew, when she considered herself “very healthy”. Fifth, the hesitance to undergo remedies; the interviewee says are akin to cancer remedies in that the cure is in some ways worse than the disease; this is compounded by the lack of social and financial support she felt she had. Sixth, the focus on other people as her primary health concern rather than herself- she worries more about ensuring her children and immediate family won’t catch the disease from her than about ensuring her own future health.

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Already this makes a few paths I can take going forward clear. From her account, Hepatitis C begins to resemble a mix of HIV’s social stigma and Cancer’s violent treatment programs; there is the fear that it will harm you and others close to you in the future, the reminder of possible past mistakes, but without the symptoms you would expect to be affecting the body in the present. It is the knowledge of the disease, not its bodily symptoms, that makes one feel unhealthy. How does one find social support when their disease carries a stigma like Hepatitis C and HIV? How does one weigh getting treatment against a vauge, looming future threat without any present symptoms? How does someone possessing knowledge that makes them feel unhealthy feel healthy again in this situation? I want to try to help answer these questions (or at least ask them) in my final paper.

This opens up the topic of which of the class readings I’ll be using and referencing in my final paper. I expect I’ll reference Jain’s “The Mortality effect” in comparing Cancer treatments with Hepitis C treatments; and I’ll certainly use at least one of the readings that speaks about the stigma of HIV, though I’m unsure which is most useful in this case. Suggestions for what other readings seem applicable are greatly welcome as well.

I’d also like to explore how some of those themes I’ve recognized in the first paragraph interact with one another. For example, is the lack of social support needed to get treatment partially stemming from the stigma of having Hepatitis C? In other words, has my interviewee not found social support because she is worried that whoever she approaches will reject her (or perhaps this has happened in the past already)? I expect this may be a common problem in diseases of this type: the stigma of the disease cuts off social support, and without such support treatment becomes impossible. In this way the disease becomes self-sustaining. Of course, there is an institutional aspect of this: stigma does not exist in a vacuum; it can only exist with social support behind it. It stands to reason to in order to provide care for those with stigmatized diseases that medical institutions should provide a means of social support; so why is it that my interviewee seems not to have received such care? Was such care offered but not deemed important, or did it come at too high a cost? Or did her doctors simply not mention it, thinking that finding social support is the job of the patient (despite the disease’s social effect of cutting off said support where it can)?

Also interesting is the idea that it was the knowledge of the disease rather than the symptoms of it that made my interviewee feel unhealthy. This seems very much the product of the modern western health system: the job of many doctors is now not just to make a patient with complaints of pain or sickness feel better but also to inform patients that feel healthy that they are not. In some ways this seems the antithesis of the job of a doctor: instead of making the sick feel well they make those that seem well feel sick. While an analysis of whether this is ethical or suggestions on how this may be changed is perhaps out of the scope of my paper, I can at least question the effect this has on the perception of the medical institution by patients. When the doctors seemingly become the cause or the illuminator of ill health rather than the remedy, how does that affect the patient’s view of the medical institution as a whole?

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