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Expert Interview: Symptoms, Side Effects, and Mental Health

After a hepatitis C diagnosis, many people have questions… “What are the common symptoms of hepatitis C? What are the side effects of treatment? Will hep C affect me long-term? What should I expect?”

To better understand the realities of hepatitis C, we asked Daryl, a HepatitisC.net advocate, to share his own experiences. Check-out his responses below, and comment below to ask your own question!

Daryl Photo

What was your most surprising hep C symptom?

“The level of brain fog I experienced. In hind-sight, it is not so surprising, but I went undiagnosed with symptoms for years, and I experienced difficulty with being able to maintain focus in my thoughts, and feelings. It affected my ability to work efficiently, as well as life in general. It was one of the symptoms I later learned were common with hep C, like fatigue, which also impacted my quality of life. Not knowing the cause of these physical and emotional manifestations was in itself problematic and diminished my well-being.”

Do you have any long-term symptoms after hepatitis C?

“I do have some long-term effects or symptoms I am certain are related to living with hep C for years. Fortunately, my liver has healed well, but I have neuropathy that persists in causing pain. It was exacerbated by 48 weeks of interferon therapy. Another persistent after-effect of living for years with hep C is digestive problems that persist, along with a handful of other issues I think are connected to hep c, interferon, and DAA therapy. They range from adrenal and thyroid abnormalities to immune exhaustion, which I believe has impacted my ability to have a sustained feelings of wellness.

After reaching SVR, it took me two years to feel somewhat normal. It had been years since I felt very well, so it really is more a question of comparisons. My feeling well was short lived, as I was found to have Cushing’s Syndrome and had a tumor on my right adrenal gland (which was later removed surgically). “Was it connected to hep C?” is a question I cannot answer, but since hep C and SVR, I have been dealing with one health issue after another.”

Did you experience depression or anxiety?

“In my experience with hep C, I did experience anxiety and depression. The anxiety may have been because of how awful I felt with worsening health. My diagnosis caused me to feel depressed, and that was because I knew so little about hep C and believed my life was over. I believed I would die a horrible death and there were no options as far as any treatment that could stop it. This was relatively short lasting (a few months) and I did seek out help, which made a big difference. Later when I treated with interferon, I experienced severe depression which was ruthless and relentless. I was offered an anti-depressant and it made a big difference. I never would have been able to complete the therapy without the support from others in the community, who were themselves experienced in dealing with the same issues.

What are your tips for talking about a hep C diagnosis?

“My advice…

  • Be aware that not everyone understands very much about hep C, and what they believe they know is typically incorrect and not at all positive. Please consider any negative consequences before taking the step to disclose. Even though there is no shame in having hep C, some people can be judgmental or cruel.
  • Choose carefully whom you share your status with because of the terrible stigma which persists with hep C and the perceived connection to drug use.
  • Disclosing your hep C status may cause others to see you as a threat to their health despite, the low risk of transmission in our normal everyday living.
  • Disclosing to employers and co-workers is tricky, despite what we hope for. The general level of understanding remains low in general.
  • If you want to affect change and help to educate those around you about hep c you may choose to disclose openly, but consider the consequences well before you disclose, it is not necessarily something that everyone around you will embrace openly.
  • If you feel strongly that you should disclose, take along some good information about hep C transmission, etc. in the form of printed materials. Hopefully, it will all go very well. Good luck!”

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The HepatitisC.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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