Wednesday, June 14, 2017
Exactly one year ago I was diagnosed with Hepatitis C. Most people don’t show any signs of being infected with Hep C in the first 20-30 years. That also means that of the 250,000-400,000 Canadians infected with Hep C, many continue to spread the disease without even knowing it.
My story is different. I ended up in the emergency room. I was weak, nauseous, my diabetes was out of control (a condition I’ve had since childhood). The intake nurse noticed that I had yellow eyes, a common sign of liver problems. The ER doctor sent me for a series of tests and then admitted me to hospital when they saw the results. They knew it was my liver but needed to do further testing.
Hepatitis C is a blood disease that is contracted from blood to blood contact. Those at high risk are people sharing drug equipment or sharing any tattoo or piercing equipment. Lower risk activities include unprotected sex where blood is present, blood to blood contact fighting, mother to child during birth and sharing toothbrushes, tweezers, nail or hair clippers and needle stick injury.
Hep C is a virus that attacks the liver. It causes liver damage (cirrhosis) and is the leading liver cancer in Canada. It has many long-term effects on the body including:
- Digestion – painful digestion, nausea, vomiting and loss of appetite
- The Central Nervous System – confusion, forgetfulness, disorientation, shaking, slurred speech and even a coma
- The Circulatory System – hypertension, internal bleeding, swollen legs and abdomen, anemia and even Type 2 diabetes
- Hair, Skin & Nails – hair loss, jaundice, and softened yellow fingernails
When the doctor finally came into my hospital room he revealed the results. It was Hepatitis C. Right there I went numb. It was like hearing a death sentence. I knew at the time there was no cure. I couldn’t figure out how I got it and admittedly knew very little about it. I immediately went through all the people I could think of, my behaviour in the past and started to cry quietly. I wondered why me?
The first person I immediately told was my partner. He finally admitted to having Hepatitis C where he likely contracted from a previous life of IV drug use. We figured I contracted it as the result of being intimate without protection where blood was present.
Telling my family and friends about contracting Hepatitis C I think was the hardest. I was afraid they would judge me or think I was something I wasn’t. I was lucky they were supportive. But I did have a few instances where some were even afraid to touch me. I knew at that moment education was critical. I understood that they might not understand so I didn’t get mad but took the opportunity to educate. I told them that transmission is only possible when it is blood to blood contact. Kissing, touching and sharing utensils are safe.
After 2 weeks in the hospital, I was finally discharged from the hospital with all my new medications to manage the symptoms of Hep C – anti nausea strips, pain meds and instruction to go for additional blood tests for my doctor to follow- up. I collected my things and my sister was there to take me home. I left the hospital smiling and waving goodbye to all the wonderful nurses. Inside I was really embarrassed and quite ashamed. How am I going to live with this?
I was contacted by the Public Health unit. I got a letter in the mail telling me that I now have a communicable disease which can spread from one person to another through a variety of ways– meaning I could hurt someone. I felt tremendous guilt and really did not want to be close to anyone.
I ended up in the hospital again but this time it was different. I wasn’t there for Hep C. I was there because of diabetes. The ER team saw on my file that I was Hep C positive. They checked my arms, legs and feet, a common protocol for diabetes to check for cuts or problems with limbs and feet. They checked three times. I thought to myself that it was odd practice. What I realized is that they were checking for track marks or needle marks. Most Hep C is contracted through IV drug use. That was not my case and it was the first time I really felt the stigma that was explained to me. I felt victimized all over again because they prejudged me and judged those that actually contracted by IV drug use.
It was the first time I felt discriminated against in my entire life. The stigma is devastating.
I knew I had to help and I needed help too.
BLOG 2: Coming on Friday GETTING HELP is the title.