Despair: Reacting to a Hepatitis C Diagnosis
Feelings of despair and rejection are common amongst all those that contact my foundation. Upon talking with a patient newly diagnosed with hep C, it is like they are whispering to me through the phone - afraid to be out and known to have this disease. I respect their feelings, as I too had that very reaction. I was embarrassed and humiliated to now be labeled as "defective". And I say that because I felt I was no longer the person I was walking into that doctor’s office as I was leaving it.
Recently, there was one man that reached out to the foundation and his voice sounded fearful and I could tell by the lightness of his tone he was feeling this same way too. He began with two questions: "Am I going to die from this"? And secondly, "What if I transmitted to my partner"?
My hep C experience
I first acknowledged his fear and said he was probably filled with more questions than just this. He agreed. I told him my story of being diagnosed in 2005 and not having any support groups or mentions of hep C on social media. I was alone. I explained I also watched my mom pass away from this disease. I shared my fear my devastation of being labeled now with "infectious disease". I then told him I faced my death sentence back then head on. I failed the then only treatment of curing hep C, which had a 50/50 chance. I prepared my will for my kids. I told him what I didn’t know was about 9 months post-failing treatment, a miracle for those fighting hep C was about to give me my life back.
I finally got on a clinical trial of a drug that ended up curing me; It is now considered the grandpa of treatments for hep C- Sovaldi. I explained that this was 5 years ago and today, this very second, we have several hep C drugs that treat all genotypes and even better, in less than 8-12 weeks - With NO INTERFERON. These treatments are curing at 98 percent cure rate. This is no longer a death sentence for him.
I could hear his voice become stronger in tone after hearing this news. He then proceeded with the question about his partner. He shared that he has not yet told her as he was afraid that she would leave him or refuse to be close to him. I told him the best thing is to be open and honest with her. I forwarded some educational material about how hep C is contracted, spread, and misunderstood. I explained that the main thing to share is how it is spread. Holding hands, sharing a drink, and kissing are not going to subject her to hep C. I did go into detail on the risk during sex. If membranes are ruptured and both partners have open wounds, infected blood can penetrate these open wounds. So, no rough sex. He asked me why his doctor could not give him any educational material upon diagnosis. He said he was given the piece of paper with lab results and told to come back for further testing such as genotype and liver damage. This man, like many, went home to confusion, loss, and fear, with no tools to get through this.
We are not alone
He thanked me for my time, and I invited him to HepatitisC.net to learn more and have his partner sign up. He was not alone. In this site, you can find hope, answers, and support. We all have lived it, survived this, and now can help through our experience. Ask for help, we may not have the answers right away but guaranteed we will get you answered.
Does reading hep C patient stories aid you in your journey?