I guess it's about time that I write my story. It's quite hard when you think about. Finding where to start, remembering the important details. It's been so long that the beginning has been lost in a sea of memories and experiences. I've read a number of blog posts from those with Hep-C and those with Scoliosis. I've noticed that both groups go through the same five stages of grief. I feel that I went through them as well, more so with Hep-C than Scoliosis. My blood disease always had a dirty feel about it while my bone disease was always just there. I dealt with the Scoliosis far sooner because I was forced to. It was there every time I looked in the mirror. It was there, that ache in my bones, every waking moment. Hepatitis would leave my mind and then in one way or another show up again. Since this blog is meant for my Hep-C, it will be the star of this particular story.
From what I can recall, my
family's Hep-C journey began in mid 2003, my eighth grade year. I can
remember my parents looking concerned and then my mom crying. My
brother and I were told that she had Hepatitis C. I was 14 at the time.
I had no idea what it was and didn't really understand what it meant.
What I did know was that everyone in the family needed to be tested to
see if any us had contracted it in some way. I don't think we were that
concerned. For me, I thought that since I already had Scoliosis, there
was no way that I would also have Hep-C. That just doesn't happen. So
it honestly wasn't a big deal to me. I was only upset that I needed to
have blood taken. I figured that I would get
tested, I'd come out negative and that would be the end of that. This
is what I would
say in my story was Stage 1: Denial. I thought my
Scoliosis exempted me from having any other issues. If anyone were to
get it it would be my brother. He'd never had anything wrong with him in
So eighth grade ended. I continued my regular teen life and began to enjoy the summer. One day I came in from the pool and I heard my mom on the phone. "What is HER viral load?". Seeing as I'm the only other female in the house, I had to assume she was talking about me. That was the first inkling that something might be wrong. I went back into the pool and thought about what I had overheard. I guess it was good that I caught a bit of my mom's conversation. If I hadn't, the next event would have been far worse.
A few days went by. Or was it a few weeks? I don't really know anymore. My parents decided to go to a Hep-C group, leaving me and my brother at home. At some point during the day, the phone rang. I'm not sure why my brother answered. Even today, we never answer the phone. The call was for me and it was the nurse or receptionist from my mom's Hep-C doctor. The conversation went as follows....
"Hi, this is so and so from doctor so and so's office"
"Um, hi." (I knew this wasn't going to be good)
"Hi, so I'm calling to make an appointment."
"Appointment for what?"
"To talk about your Hepatitis C."
"I didn't know I had it."
"Oh, I'll call back later."
She didn't call back. I remember calling my
mom, I'm pretty sure I was crying. My parents rushed home. Now this
is where this part of the story ends. I can't remember anything after
this point. I mean, it has been ten years.
The next part of the story I would describe as Stage 2: Anger.
At this point I was extremely angry that I was the one, not my brother,
to get it. I didn't think it was fair. Of course I never wished that
he'd contracted it. I would have just preferred that it wasn't me. More
than anything however, I was angry that I had to enter high school with
something that automatically made me so different than everyone else. I
went through a period where I
would actually stare at people and wonder what they would say if they
much would they hate me? I was convinced that no one would ever want to
be around me. I remember I heard a comment, within a few months of
being diagnosed, by a boy in my science class. He had been given a
baseball glove by
someone and he said "Ew, it's sweaty. I don't want to get Hepatitis
C". Until my situation, I hadn't even heard of Hep so to hear someone
pick that from all of the infectious diseases made me so angry. This made me shrink into myself. I didn't think I would
ever tell anyone.
The problem with keeping it all a secret is it causes you to become isolated. Isolation breeds anger and the angrier I became, the more I wondered why me. I'd say that this begins my own Stage 3: Bargaining. Why out of the entire family was I the only one? Why did I have Scoliosis AND Hep-C? What made me different? I became so jealous of my brother because he was normal and I wasn't. I looked into what made me the one to get Hep-C. I think the best explanation I found was my mom probably had a higher viral load at the time. The virus had two and a half years to multiply before I was born. That's it, the whole explanation. There was nothing that any of us could have done.
that something like Hep-C was out of my hands and it happened by chance
was actually harder. I felt I was destined to be different. I spent
most of high school looking at everyone around me and being angry at
them for being normal. I wanted that so badly. That absolute need began my Stage 4: Depression.
I don't think it is possible to go through some of the things I did as a
teen and not have some sort of depression. Being a teen girl is hard
enough. Now, add to it skeletal
deformities and a virus. It would have been a miracle if I'd come through it unscathed. I've seen that sort of depression in the number
of the girls who are dealing with their Scoliosis, as well as the newly
with Hep-C. Now I don't want to say I had full-blown depression because that
would be misleading. It was more like a sadness. A sadness stemming
from having a life I didn't
expect or want. I chose to compare my life to others and my jealousy
issues built up my fantasy of how everyone else had perfect lives. At this point, I was still so afraid that people would hate me or be afraid of me
that I kept the Hep-C a secret. But isolation doesn't protect you. All
it does is give your brain time to dig a deep hole to
fill with all the negative thoughts. Those thoughts sit there and grow.
level of this varied throughout my high school life. It wasn't until I
began to tell people about my Hepatitis that I started to feel normal again. However, I didn't
tell just anyone. I only told those who I felt could relate to me. It
turned out that a few of my friends were going through their own
struggles. Serious ones as well. It was like we all had each other to
share our secrets to. It was such a relief. Because of this, I FINALLY found my Stage 5: Acceptance.
It takes a lot to find this stage though. There is so much
to work through mentally and emotionally. For me it took probably eight
years. I'm at the point now where there are so many things in my life
that are worth more of my time than either Scoliosis or Hep-C. I've
lived through enough to know that things can be worse and that
things will always get better.
Today I am in such a different place than I was ten years ago...even two
years ago. I don't see treatment as something to be afraid of or something that I need to run
away from. For me it's the last chapter of this story. I've spent half of
my life dealing with medical issues. Scoliosis started at age twelve and only a year later came Hep-C. My Scoliosis has been sorted so now it's time to
tackle Hep-C. For me, in a few months, a twelve year journey is going
Soon, the next story will begin And that is actually quite exciting.