Continued… Since I was diagnosed with hepatitis c, I learned a lot while sitting in waiting rooms at the doctor’s office, hospitals, and labs. Here’s the rest of lessons learned in the Hepatitis C waiting room…
Remaining neglected is not an enviable place. Let’s face it though: During our time of living with hep c and going through treatment, we are going to feel neglected. People are not trying to be cruel or mean. It’s just that they have their own agenda. Family members want to help or contribute, but honestly? They have their own lives and priorities. Our needs or wants will not always be met when we think they should. Doctors have other patients, social workers, or health care workers all have huge caseloads of people. Your name may be toward the bottom of the list. I know there were times my nurse practitioner or even my daughter thought, “She can wait”. I was a little cranky about that. Especially while on Ribavirin. I am laughing out loud remembering the pushy behavior that got me an answer when I wanted it.
The Practical side to feeling neglected is that if you know that your hemoglobin is low, do NOT let anyone neglect you. Speak up! When you know that if you do not get something on your stomach and you are glued to the couch in a room that seems to be spinning, do not let anyone neglect you. If no one else is listening, let me know. I mean it. I have made calls to the doctor’s office, supervisors at the specialty pharmacy, the state insurance commissioner, and have also asked to “talk to your supervisor” on more than one occasion to many different people. There is a difference between a reasonable period of waiting and total neglect. You know the difference.
Postponement has become a way of life for us. That may be the most frustrating part of waiting. Our society is full of quick answers, quick meals, quick solutions. We have become quickaholics. We want it all now. It is difficult to sit in a waiting room. We want to fast forward and get to the end. There is nothing wrong with wanting to know the outcome. As a matter of fact, it is very natural. How can we plan our lives today, much less look to the future if we do not know the outcome? Deep sigh. Read this slowly: We have to find a way. That has become our new reality. We must look at this day with joy. We must look toward our future with joy. Life is not meant to be postponed. Not one second of it goes by without the hand of time ticking off more of our minutes, days, and years left on this earth. Live each moment as though it were the last.
The Practical side of postponement – So what does that look like? It means you are sitting there looking at the magazines or the book you brought with you. Maybe you are learning something new from them. A new recipe or approach to life. It does not matter. Write it down. Text it to yourself to think about later. Picture yourself going to the store on the way home and getting the supplies to make it. Picture what pan or bowl you will use. Maybe you read an article about walking as a way to improve your health. Picture yourself stopping at a park near your home. Go there when you leave the doctor’s office. Even if you just walk from your car to a bench, mentally picture yourself doing it while you’re still sitting in the waiting room.
Look forward to eagerly or expectantly – So far all of the definitions of waiting have had a negative connotation to them. Let’s take a look at the positive side of waiting. Sitting in the waiting room can have an upside. I remember laying on the exam table once I had finally made the journey from the actual waiting room to the back of the office or procedure room. That is where the face to face encounter with the nurse or lab technician happens. Now you are talking with a human being who is taking your temp. They want to interpret your current status which includes your blood lab values, your vital signs, your list of side effects and symptoms. The urge to talk and tell all of your aches and pains rises up. You finally feel like someone knowledgeable is in charge. For the first time in days or weeks there is someone who can give you an answer regarding all the little worries in your head. Trying to be concise is not easy and you find yourself rambling. You look into their eyes or try and peek at their notes. Or maybe you are in one of those physical or mental states where you DO crawl up on the exam table and sleep knowing that it is out of your hands and in the hands of capable and efficient experts. Either way, you are looking forward to good news. The practical side of this is to do just that. Listen to the reality, but also LOOK and listen for the good signs; notice the reassuring words and smiles. The nurse’s calm voice may sound hurried, but they are still interested in YOUR personal experience. If you feel like death warmed over, it may have a two pronged effect. You may feel like they are too positive with their calm voice telling you that everything is going as planned. You may feel that they do not know what you are really going through. They don’t. It is a very personal place, your inner waiting room. Or you may be sooo hopeful that you block out any reality and just do what they say. Your platelets are too low? They want you to try an experimental drug with outrageously bad potential side effects? Just trust and listen. Listen for the good news. It’s okay. Someone more knowledgeable than you is in control. Do whatever they say. They tell you that this rescue drug, coupled with your undetected viral load will help you to finish treatment? Do it. They cite their experience with other patients or quote the latest research they have studied? Listen.
The practical side of looking forward eagerly is to grab any thread of hope and hold on for dear life. It is YOUR dear life and here is your chance to hold onto it. Look forward to how well the drug will work. Look forward to the day when you will reach a sustained viral response (SVR). Look forward to the next variceal banding knowing that it can bring you a reprieve from an esophageal bleedout. Look forward to reversal of fibrosis. Look forward with eager expectation to another day to enjoy this wonderful gift of life.
The visit finally comes to an end. You check out and head to your car. Another day of sitting in the waiting room is over. Your visit gave you an opportunity to voice your fears. It gave you an chance to dream about your future and use all the readiness skills that you have. It helped you to be the center of someone’s attention while others carefully combed over your chart and you felt less neglected. It gave you hope and expectancy for your life. You listen to the voice of the doctor or nurse tell the truth about your condition. Then you listen to your own voice and train it to expect the best.
The hep c waiting room is a place that those of us with hep c or liver disease go. But it is also a place that we live in daily. Each morning we begin anew. A new set of dreams, thoughts, skills, and visions for the future are all yours – waiting for you. Maybe, just maybe, we have more control than we thought. Maybe when we choose our place to sit and wait, we can embrace our past present and future. We can learn to wait, knowing that others in the same situation are waiting also. In waiting rooms all around the world, the circle of friends with hepatitis C virus are waiting with you. I’m there with you too. I’ll bring my favorite book and a pair of knitting needles. I’ll probably pull up a Youtube in an attempt to make you smile. That’s what friends are for. Karen:)
