When You Don’t Look Sick with Hepatitis C: how to
Some people actually have the words “I told you I was sick” engraved on their tombstone. That SO would be like me. From the age of 30 on I was telling my doctors that my food didn’t metabolize well, my body ached, there was dizziness, fatigue, and a bunch of other symptoms. I honestly felt like a hypochondriac some of the time. They kept prescribing antidepressants, sleep aids, and pain pills. I didn’t want that. I just wanted to feel good. So I wouldn’t take my meds. Then I got in trouble for not following the doctor’s orders. The bottom line is, when you don’t look sick with Hepatitis C, people have a hard time taking you seriously.
In spite of feeling bad, my pride kept me active. I might be sick as a dog, but I would get up and fake my way through the day. Beginning the day with bed yoga helped me move past the pain. That’s a practice I continue today! It’s always seemed like exercise made me feel better, probably because of the endorphins. There was a price to pay though. I would stay propped up with caffeine in order to stay moving. By evening, I was beyond tired, sore, and hungry. Many times there were activities to attend, so I would go for more caffeine. Family fun with the kiddos, school, community stuff, and work related events were fun to think about. I wanted to be there. So I pushed.
My routine was to come home from work and take a nap. The last year, I took a nap at work before grading papers. After a couple of hours, another nap would help me with the drive home. If I had an event, I would set my phone alarm for 15 minutes and then head out. Many times, I didn’t sleep. But lying there quietly helped a lot. When the alarm went off, my heart would jump and that adrenaline would get my nerves jangled enough to move fast. I was up and out the door for a sporting event, teachers night, or just a fun family evening.
It makes me feel sad to remember how hard I pushed myself. I gave all that my body had to give and then pushed it to give more. I love my family and had a strong desire to be a good wife and mother. I didn’t want those sweet grandkids to have anything less than full time Nana. Students love teachers to show up for their events. I did a lot of volunteer work in the church and community. It seemed like my energy had no bounds. No one knew how hard I was pushing.
We find ways to create an illusion of health, don’t we? Some of it had to do with my diet. I ate clean and simple food most of the time. Occasional pizza or cheeseburgers were there, but I’ve always been a healthy, picky eater. Food definitely helped support my liver through the first 3 stages of cirrhosis. When the dark circles showed up around my eyes, I would use concealers and make up artistry to erase the fatigue.
Toward the end, it was hard to hide. The last 2 years before diagnosis with Hepatitis C, every little bump turned into a major bruise. I fell down more frequently, and ran into things. I turned to herbs and supplements for support, but it didn’t help. I was using high mega doses of many supplements which was even harder on my liver.
The last 2 weeks before my diagnosis, I thought the stomach bug had bit me. I was eating red jello and popsicles to stay hydrated between trips to the bathroom. I napped near the toilet, not realizing that I was throwing up blood, not jello. I withdrew from family so they wouldn’t “catch the flu”. It seemed normal that I would have a few pounds weight loss. Within week or so, I felt stronger and got ready for school to start.
The funny thing is, I looked perfectly normal the day my liver totally failed. I fixed my hair, rode my bicycle, worked in my classroom, and got my teeth cleaned. No one commented on my poor health or appearance. Driving home from the dentist, my feet swelled double. I could barely walk into the store to get crackers and broth. The next day, my doctor sent me to the emergency room. My yellowing skin became obvious.
All in all, being diagnosed with end stage liver disease was kind of validating. A lot of things began to make sense. I reflected back over all the years of pushing my body. It still brings up a lot of emotions like anger, sadness, and disappointment. When you don’t look sick with Hepatitis C and you’ve spent your life trying to appear normal, it’s okay to grieve. I’m learning to let myself rest now.
Finally, after all of these years, it’s safe for me to say that I don’t feel good. I hope this will help you take your own diagnosis seriously. Even if you don’t look sick, your body may be tired. Listen to your body. Nurture you. Take care of you. Much love, xo Karen