Three Things My Diagnosis Taught Me
Last updated: October 2020
Living with a hepatitis C diagnosis can be hard on any person, regardless of demographics. It can be shocking and debilitating when the doctor first gives the unfortunate news. With any of life’s challenges, there is always something to be learned. A close friend once told me, ‘We grow at the speed of pain,’ and that is certainly true for me. Through the good times and the bad, I have certainly grown and changed as a result of my diagnosis. These are three things my diagnosis has taught me!
Some days, just getting out of bed is a win!
My experience with hepatitis C was painful. When I was diagnosed, I was in an acute stage of my illness and was presenting very intense symptoms. I was yellow, fatigued beyond belief, and consistently nauseous. There were many days that I couldn’t even get out of bed; I was so tired. As a person who is a ‘go-getter’, it was incredibly hard for me to accept my limitations at the time. I felt a tremendous amount of guilt and shame. Through counseling and much self-introspection, I was able, in time, to accept that some days just getting out of bed is a huge achievement! Learning to be gentle with myself and lower my expectations was paramount in helping me accept the reality of my diagnosis and the new physical limitations my health imposed.
Hepatitis C infection has no prejudice
In my work as a hepatitis C educator and advocate, I have been blessed to meet dozens of people who share with me their experiences with diagnosis and treatment. They come from a wide range of demographics. There is a prevalent stigma that hepatitis C is a ‘drug addict disease,’ due to its blood-to-blood transmission method. Many people I have encountered who have not experienced having hepatitis C cannot fathom how it could be transmitted apart from sharing a needle. Many of my clients are not drug users and did not contract the virus through sharing drug use equipment. Educating the general public about the transmission of hepatitis C has improved this stigmatizing mindset greatly in my community. Blood transfusions, surgeries, donating blood, sharing personal equipment (such as nail clippers or razors), and even through sex: these are all methods that hepatitis C has been transmitted.
Keep the end goal in sight!
When I was waiting for treatment approval, it felt like each day was a year. I was exhausted from the constant doctor's appointments, blood screens, and liver ultrasounds. It sometimes felt like nothing was moving forward and I would never get the treatment. I would have dreams where I would be denied approval for absolutely insane reasons, like not being approved due to having blonde hair! The waiting game was making me go crazy! What helped me stay grounded was constantly reminding myself why I was doing this. For my health, for my family and mostly for me! I placed a sticky note with my goals on my bathroom mirror so that I would be reminded every day that the wait would be worth it. It didn’t necessarily make the waiting easier, but it kept me focused on the ‘why.’
If you don’t use it, you lose it!
I never imagined that there would be lessons to learn from such a difficult diagnosis and period of my life. When I look back, it is apparent that my experience living with hepatitis C completely changed me as a person. When life presents difficult situations, I am able to face them with more resiliency than before. My capacity for patience and acceptance has grown tenfold- especially when I need to be patient and accepting of myself. The biggest lesson my diagnosis has taught me is gratitude. Today, I am alive, mostly healthy, and able to work to better the lives of people who are living with hepatitis C currently. I truly couldn’t ask for more!