My Advice to Anyone Struggling with Hepatitis C
The process from hep C exposure to treatment completion can be a long, confusing, and often stressful process and many may need help as they struggle through the process. Many of those infected with hep C either don’t have, or don’t associate early symptoms with the disease and they therefore may not get tested. If you are in the high-risk group, you should get tested as soon as possible. The earlier one is diagnosed and if positive receives treatment, the lower the chances of long-term damage to the liver. If your illness is in the early acute or chronic stage when symptoms are more serious, help is available through many sources.
How to get help
For those with health insurance, most providers offer hepatitis specialists that can answer your questions, alleviate fears, explain the trajectory of the disease, provide testing, and recommended and initiate treatment. For those with or without health insurance, there are many free support organizations that provide a range of services. For example, the Hepatitis Education Project in Seattle, WA offers community HCV testing, a correctional health program, educational outreach, HCV support groups, medical case management, and walk-in Services.1
Many services will also assist those without insurance to find funding opportunities for subsidized treatments. For those struggling with either the mental health and physiological impacts of hep C, you may want to visit one of the many support groups hosted by government agencies, religious organizations, or healthcare providers. These are readily accessed through an online search.
Talking about hepatitis C with others
Personally, I rarely talk about hep C since completing successful treatment. Initially I did discuss the situation with family and close friends. Those I did discuss it with those that understood from pervious conversations that I was high-risk; They were concerned about my health and the potential outcome. When I initially told them of my diagnosis they were non-judgment and responded without condemnation. I do not share my previous nor current status with work colleagues, acquaintances, or more distant family members. Frankly, I’m not sure how they would receive and digest the information and, for me personally, I don’t see the mutual benefits in bringing it up. I have talked to acquaintances in the high-risk category who fear they might be or have been diagnosed with the disease. In these cases, talking to an experienced confidant was helpful and cathartic.
If you're facing hep C stigma
As I noted in “Myths and Facts about Hepatitis C”, there is quite a bit of ignorance about hep C and stigma towards those with it. For these reasons, I was and still am cautious about sharing, though obviously I am not silent about. However, every person's attitude and experiences are different, and many find comfort in talking about hep C more openly. Personally, I have not been judged by those I have shared my status with. That said, I carefully consider those to whom I reveal my status, and in doing so create a self-buffering that minimizes those who might judge on a moral basis or out of ignorance. While everyone is different, I feel most comfortable telling those I trust and feel would be supportive but maintaining a silence with others whose reactions are unpredictable.
What advice would you share with someone struggling with hep C?
Does reading hep C patient stories aid you in your journey?