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Now This Is A Story All About How My Life Got Twist Turned Upside Down

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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 his life. 


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 knew. How 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.


Realizing 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 diagnosed 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.


The 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 to end.

  

Soon, the next story will begin  And that is actually quite exciting.


2 Comments

I'm so sorry this is part of your story, though please remember that part is all it is. I suppose I went through the same phases though I was 52 when I found out I had Hep C for about 30, give or take 5, years. Basically my whole adult life. I sought answers for at least 12 years before I was finally diagnosed. I'm not angry at the docs, knowledge was scanty at best, until the last 2 docs who had to notice my liver enzymes but did nothing about them.
My greatest sources of anger are that had I known sooner, I could have made arrangements for my kids since I became more and more unable to do a very good job. The 2nd reason is the rude treatment of everyone who is sick as people who somehow deserve Hep C because of wayward ways. Many of the people, most actually lived pretty modest lives. (When the same prejudice is sent my way I could care less since anyone who would say something is not someone I want to know.) Worst of all are all the Viet Nam vets with HCV, about 65% of all U.S. cases. Not only are they stigmatized as druggies, most got it from air gun inoculations and shavers used to sheer off their hair, but they get a lower standard of care.
I worry that I may have passed it along to my kids and have them tested yearly. So far, so good
My heart breaks for young people like you and for those without homes, clean sources of water, family and friends to care, or insurance and good docs to get them and give them treatments they need.
Bravo for telling your story. Be well as you can.

Thank you for your comment. : )

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This page contains a single entry by Kelsey McCann published on January 13, 2013 6:00 PM.

Hep-C Was Problem #2 was the previous entry in this blog.

Brushing My Hair Do I Look Perfect? is the next entry in this blog.

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