Written By: Teri Gottlieb
Over the past few years, I have been involved with so many of you as you have dealt with your diagnosis of Hepatitis C or started treatment, gone through treatment or completed treatment. I want all of you to know that I am right there with you. I feel your pain and your frustration as you go through this process. Some of you have brought me to tears knowing how much pain you are in and when you get good news, I get just as excited as you do.
You all know that I understand the emotions that go with getting this diagnosis and how much of a shock it can be. You also know that I went thru treatment and had a very rough time of it, but I got through it. Getting through that 48 weeks of treatment was a fight. It was the hardest thing I have ever had to do in my life but I'm glad I did it.
Treatment is doable. I swear I'm a great big wimp and I did a year of it. If I can do this, ANYONE can do this. It really bothers me when people quit treatment because it's hard. When I hear someone say that treatment is too difficult and they are going to wait for the new drugs to come out, I shudder. For one thing, we don't know if these new drugs are ever going to see the light of day. Recently one has been approved but it's not currently being used across all genotypes. We also don't know if that ride on the new treatment train will be any easier. When you quit treatment before you are finished, the virus will most likely come back and it becomes that much harder to clear the next time around. The chances of clearing on subsequent rounds of treatment are always lower than the previous time. Why put yourself through that? When you feel like you can't take another minute of treatment, take a deep breath and tell yourself that you can. Treatment for me was one day at a time. Sometimes it was one hour at a time, and then there were those days where it was one minute at a time. There is nothing wrong with one minute at a time when that is all you can do. Putting one foot in front of the other is sometimes hard but in this case, we have to do it.
There are also people out there who are living with this virus and refusing treatment, even though they need it, because they have heard the horror stories about Interferon. Folks, not everyone has intense side effects from treatment. There are many people who go thru this treatment without missing a beat, but you know what? We don't hear from them. For them, treatment is no big deal and they are dealing with it well. The stories we hear about are from people like me who had a hard time. Try to remember that not everyone has a hard time and unless you try, you'll never know if it would be easy for you. '
I also want you to understand that you are your own best advocate when it comes to your hepatitis c. Your best defense against bad medical advice is knowledge. Knowledge is power. If there is something that your doctors says that just doesn't seem right, ask questions, do the research and get the right answer. There is so much information available to you about hepatitis c that there is no reason to be ignorant about your disease. Ignorance in this case is not bliss. Unfortunately there are some doctors out there that are not well versed in hepatitis c and its treatment, even more so now with the addition of drugs like Incivek and Victrelis. These two drugs are similar in that they are both protease inhibitors but the commonality stops there. They are administered differently and have different side effects. I have heard of many instances where doctors have confused these two drugs... Not good. Most of the time, if we have done our research on our disease and its treatment, we can tell when something doesn't sound right. If something doesn't sound right to you, it probably isn't. SPEAK UP! There is nothing wrong with questioning your doctor, just do it tactfully. I've heard some crazy things that doctors have said and some things that they aren't saying but they should. It scares me sometimes.
As difficult as this journey is for us, it is even harder on our loved ones. We tend to get a bit self-centered during treatment and that's okay and even normal but please remember that your family is hurting too. They see you in pain, with a fever, frustrated and angry and they are feeling helpless,. They want to help you but there is nothing they can do. It hurts them to see you like this and not be able to help you. For the women, your husband has been the one to protect you and he can't protect you from this. He is used to fixing things and right now, he can't fix you. For the men, your wife has that mother instinct. As women, we want to make it better but in this case, we can't. This isn't a boo boo that we can kiss and make better like we do with our children. We can't put a Spiderman Band-Aid on it and make it all better. It hurts. Your immediate family, your parents, your kids and your close friends... they are all feeling pain from this. Do me a favor, please acknowledge their pain. Just once. For a minute, just say "THANK YOU" to them. It will help them a great deal. After you finish reading this, I want you each to go thank the person that has been helping you through this and tell them that you love them. They probably need to hear it about now.
We all have a different walk with hepatitis c. This virus and its treatment affect each of us differently. Whether you are newly diagnosed, have lived being aware you are carrying this virus for many years, on treatment, post treatment or cured, we're all in this together. Think about this for a minute. Who else understands all of this besides us, and in some cases our immediate family? And how many of you have actually let your family in on everything you're experiencing? Most of us haven't. The only ones that truly get it are the ones that have it. We're all walking the same path, together. For me, I am no different than the person who has just been diagnosed. We have common ground. Individually we have a voice but it is a soft one. Together, we are one voice and we are as loud as a police siren. Together we can get things done and get attention drawn to this virus. Together we are one big voice and we can take on this battle. Please don't forget that. We all support each other, we have done that well. We all need each other, so please, treat one another with love and respect.
I consider each and every one of you my friends. I have had the pleasure of meeting many of you in person and I've talked to even more of you on the phone. Sometimes regularly! You are all special to me. For those of you who are living with this virus active in your body, I am right there beside you during your struggles. When you are sick because of a shot of Interferon and a handful of Ribavirin, I wish I could take the pain away for you. If I could do that treatment for you, I promise you I would. I light a candle each and every night for all of you and I make a wish each time I light it. The wish is always the same. That every one of you can clear this horrible virus and use that "C" word with me. I want you to be able to say, "I am cured. I am a survivor."
Here's to obliterating this stupid virus.