Friday, September 28, 2012

A New Diagnosis

When you take those vows on your wedding day, “for better or worse, in sickness and health” I think most people assume the same thing: that we will never be tested, that God, or the Universe, or Karma will be good to them, that their lives and the marriage will be happy and healthy and good. I know that it’s what I assumed. I never imagined that during our first year of marriage Tom and I would face challenges that we never expected, that we never saw coming.

Remember this post? Well as it turns out, my health symptoms were caused by my birth control, but not for the reasons I expected. After going to my doctor for extreme fatigue, which I feared was related to diabetes, I found out that I have Hepatitis C.

Hepatitis C is a disease caused by a virus that infects the liver. In time, it can lead to permanent liver damage as well as cirrhosis, liver cancer, and liver failure. Hepatitis C can go undiagnosed for years because it often shows no symptoms in the early stages and is not part of any routine blood testing. My doctors seem to believe that I contracted the disease shortly after I was born through, either by a transfusion or surgery. That’s almost thirty years. Twenty-five of which I had no symptoms. Once I started having symptoms, they were so vague that no diagnoses was made right away.

Right after my diagnosis, I was ashamed and I was angry. I was ashamed, because I thought that maybe somehow it was my fault. I thought that anyone that knew might judge me or think less of me for something that wasn’t even my fault. I was angry that the measures taken to save me so long ago might have hurt me. I was angry at the unfairness of it all. Why did it happen to me? Wasn't Cerebral Palsy enough? Had I not been poked, medicated and cut open enough for one lifetime? I cried a lot. One minute, I’d be fine, and then the next I would be sobbing because I wasn’t the same;I was diseased and my life was never going to be the same. Tom was awesome. He hugged me and told me he loved me. Upbeat from the beginning he said, “This is right now, but it is not forever.

I remember thinking at one point that this must have been the way my parents felt after my diagnoses of Cerebral Palsy. They would get caught up in my smile, my laugh, my antics and then they would remember the doctor telling them that I might never walk, that I wouldn’t be like other little girls, that I might not go to college, or get married or have kids. They would wonder how people might perceive me, whether or not I would be accepted by other children, or if one day someone would see past the disability and fall in love with me.

That’s when I realized this diagnosis was just that, a diagnosis, one that needs treatment. There is no reason to be ashamed, no reason that it has to control or dictate what my life is going to be. In fact, just like with my Cerebral Palsy, I may be able to help other people going through a similar experience. So despite the fact that some days I am still ashamed, still think that this is unfair, I’ve decided to share my experience with this disease that effects 4 million people in the US. 

I start treatment for Hepatitis at the end of October. I have been told that treatment is difficult, and I am not sure what the next year might bring. My husband and family and friends comfort me and give me hope. They are so supportive. Without them, I would still be wallowing in self-pity and I never would have had the strength to write this.

I was born and fighter and I will die a fighter, but NOT from this disease. Let’s go. I’m ready.
If you want to learn more about Hepatitis C click here.


  1. You are strong and you are a fighter, you amaze me daily. I love you forever seester.

  2. Stay strong. You inspire me with my own struggles.

  3. You are amazing and I totally agree with your seester!!! Iam here for whatever I can do to help! I love you very much! Mom

  4. We are our harshest critics, especially about how others perceive us. I also struggle with notions of things beyond my control being my fault and worrying that if others found out they would be disgusted with me and blame me. But when we reflect on how we would feel about others in our position we often find that we would have no trouble loving and accepting them for the wonderful people they are - regardless of what has happened to them. You're a strong woman and as rough as things are for you now I know you won't stop fighting, and no one whose opinion matters would ever think anything less of you over something like this.
    Give that Hep C hell!

  5. I have another acquaintance with CP from a transfusion at birth. It is odd it hasn't shown up anywhere until now. Do you want to have kids? Will this affect your ability to do so? There's always adoption, if so. I guess now you get to add chronic illness to your list. Shari

  6. You are so fabulous. I couldn't ask for a better friend or big sister and I am always thinking about you.

  7. You are an amazing person. Sorry if my English is not good at all, I'm writing you from Spain. People can´t be indifferent to a person like you. I think this is not actually a consolation, but I am (and sure another people too) very astonished with you, with every step you do.

    Hope you feel better now.