There have been many people who have said that the potential and actual transmission of hepatitis C at Rose Medical Center and Audubon Surgery Center are teachable moments for the organization I run, Hep C Connection.
Indeed, the State of Colorado, and now two other states, have developed awareness about the virus, have learned that it is transmitted by blood, that re-using a needle or syringe that was used by someone who is HCV positive is the most common route of transmission these days, and that people with the virus who are employed are protected by the Americans with Disabilities Act.
While these are all relevant and important topics, we’re missing the teachable moment with one big group – the people who have tested positive for the hepatitis C virus and the thousands still waiting to be tested or waiting for results.
What’s missing in the coverage are strategies to cope with the emotions they’re feeling as they wait, or the anger they have at the surgery technician who may have made them ill.
There are many reasons why this unique group of people should seek emotional support for the short and long-term journey they may be facing.
Seeking counseling in any form, whether through a therapist, member of the clergy, support group, or other means, will give you an opportunity to discuss your feelings with someone who will empathetically listen to your comments, provide feedback without judgment, and outline constructive ways of dealing with the variety of emotions. You may think you don’t need to seek professional help, but this may be too great of a burden for a family member or friend to truly provide the assistance you need. A support group can be a great way to seek counseling.
Doctors don’t necessarily explain information about hepatitis C in a way that everyone understands. Hepatitis C is a complicated disease, much of which is still being studied.
If someone chooses to go through treatment (and there are valid reasons not to undergo treatment), there are a battery of tests that happen throughout the treatment phase and it’s important to understand what the results are telling you and to discuss the side effects that you may be feeling.
Meeting with a support group facilitator who is trained about hepatitis C can provide a layman’s perspective on test results while explaining what may happen as next steps. Support groups provide information as well as emotional support. Use it as your information clearinghouse.
Compliance with treatment is easier if you are in a hepatitis C support group. Treatment for genotype 1b can involve taking two medications for 48 weeks. This is a long time in anyone’s book and following the dosing schedule, while important for success, can get difficult over time. Support group members have been there – they can talk about side effects and ways of reducing them that were effective for them, and they can be your cheerleaders when you’re feeling tired and want to stop.
The stigma of hepatitis C can be overwhelming and people in the same circumstance can provide effective tools for how to deal with it in the future. Do you tell an employer? What about friends? In what situations does it make sense not to disclose?
Hep C Connection has organized a special one-time support group for anyone affected by the exposure to hepatitis C at Rose Medical Center or Audubon Surgical Center. It will be held on Wednesday, July 29 from 6:30 P.M. to 8:30 P.M. To ensure privacy for anyone who attends, we request that you call 720-917-3960 to RSVP and receive the location. Patient confidentiality is our utmost concern. The group will be led by a long-time Hep C Connection support group leader who has personal experience with the disease.
Whether you choose to attend a support group or not, we encourage you to reach out to a mental health professional to discuss what you are feeling. Don’t ignore your mental health while focusing on your physical health. There are ways to cope with what you are going through.
Nancy Steinfurth is executive director for the Hep C Connection. EDITOR’S NOTE: This is an online-only column and has not been edited.
