The Emotional Burden of Living with Hepatitis C

Stress and challenges can come in all shapes and sizes with hepatitis C and liver disease. They can be similar, yet different, for every person and their family. Common stressors with hep C Hepatitis C can mean a whole host of challenges. Stress can come from many places, including: Emotional stress with diagnosis, treatment, or recovery Medical: Finding the right doctor and developing your healthcare team, fighting through the healthcare system Dealing with insurance, or even not having insurance Finances Relationship difficulties; Lack of support Fear: Being afraid of the what-if’s, the future, and details of treatment or recovery Dealing with stress and other challenges These are just a few examples of stressors and challenges that can be there. But, just as there are challenges, there are also productive and proactive ways to deal with them. We all experience stress, the difference comes with how we deal with them. Choices Instead of focusing on the challenge or obstacle, don’t allow the challenge to be a roadblock or stopping point toward moving forward with good health decisions. Don’t allow your emotions to be in charge of decisions, actions, and your attitude. Focus on options, the solution, and the action steps you need to take to overcome the challenge. Whenever I’m faced with a challenge and dealing with stress, I personally rely on my faith and prayer, asking for God’s help. I ask Him to help me see the situation and the solution from His perspective and give me the attitude and strength I need to take action. Mindset A shift in your mental mindset needs to take place. We face a choice when dealing with stress and challenges. We can choose victim or victor mentality. A victim mindset is a negative approach, often based in fear and hopelessness. Fear of the what-if’s, that can leave us in a depressed state, stopping us in our tracks from seeing solutions. Victims allow their emotions to be in control, which in reality, is out of control. On the other hand, a victor mindset is a positive approach, that sees the facts, but does not allow emotions to be in control of our decisions and actions. Victors are problem solvers, looking for solutions and options to overcome the challenge. Victors are hopeful and look for the good in the situation while learning from mistakes and doing what it takes to promote change. Victor’s are proactive. My advice We all deal with stress and challenges. We even fall into the pit of a down mindset from time to time; The key is getting up, dusting ourselves off and deciding how we’re going to handle stress and approach the challenge (victim or victor). Don’t allow the stress and challenges with hepatitis C to get the best of you. You are a victor, an overcomer! How do you handle stress and challenges with hepatitis C? [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] When I was diagnosed with hepatitis C many years ago, there were few support groups. The only websites available offered a dark outcome. I saw many people give up. Many marriages broke up. This is what happens with the absence of hope. This is also a real danger of comparing our lives with other hepatitis C patients. When I was first diagnosed in 1994, I told my physician I wanted to talk to others who were hope with skin on. I desired to talk to others who had come through this journey and were on the other side of it. People whose experience offered hope that I could grab onto the patient’s experience. Sadly, during those early years, there was very little hope. Today’s treatments for hepatitis C are greatly improved with shorter treatment times, fewer side effects, and over 95% cure rates. Even still, some patients and their families can still struggle. While it’s natural for us to want to learn about the treatment and recovery experience by reading about someone else’s journey with hepatitis C, there are some dangers in comparing ourselves. The danger of comparisons The danger of comparing others' experiences with hepatitis C to ours is this: Every person’s medical history is different Every person’s liver condition is different Every person’s body responds to treatment differently Every person’s post-treatment recovery is different Social media Social media can either be good or bad for hepatitis C patients and their families. You need to be discerning about what information is being shared. On social media, you don’t generally hear the whole story. Someone can present a very bad experience or a great experience. Without being aware you’re doing it, you may think you’ll have the same experience they did. Their experience and words can influence your thoughts and decisions; This can be either good or bad. If you fear the worst can happen because that was their experience, you’re setting yourself up for a bad experience before you even start. Don’t allow fear to control your emotions and influence your decisions. If you think you’ll sail through treatment and recovery, free from all side effects, because that was someone else’s experience, that may be unrealistic, because not every patient’s experience is exactly the same. What you can do in fighting hep C You can take proactive steps, like: Take each day and step as it comes Talk to your physician and healthcare team about your liver and medical condition, tests, treatment, and recovery Communicate with them about your symptoms and if you experience side effects Be proactive on what you can do to help if side effects occur We can glean wisdom and knowledge in hepatitis C, common treatment side effects, how to deal with specific issues, etc from others - but always check the medical facts. Remember, your experience may not be the same as someone else’s. But glean hope. There is great hope to be cured of hepatitis C and get beyond it. Keep your focus on the goal and never give up! [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],This blog is for those of us who carry emotional weight or feel like a burden when they’re sick with hepatitis C. Let me start off by saying that my family and friends did their best to support me in every way. I give a lot of thanks for all that was done for me. But there was, and still is, a huge part of me that feels like a burden with hepatitis C. I’m working on that, and making a list for me became making a list for you too. What to do when you feel like a burden to others: Stop apologizing I’ve begun to realize how often my sentence have started with "I’m sorry, but..." Sometimes, I’m asking for help and hate to bother anyone. But there are times when I need an item from the store or a drive to the doctor. I’m not sorry that I need another human being. I don’t like to inconvenience anyone, but I’m not sorry. Sorry has a negative quality that makes me feel like I’m a burden. I’m always polite when asking and grateful for help. That’s not a being a burden, that’s being a blessing. Realize you’re a valuable human being Yes, I go for all of that "feel good" type of thinking. It sure beats lying around feeling like a burden or with the emotional weight of hepatitis C. When you hesitate to ask for help, think about what you would do if someone asked you to do something for them. You would probably be willing to help out your fellow person. So, think about the fact that you are so very worthy of letting others help you out. If you help someone, you actually feel good about it because you value that person. Let someone else show you are valuable by helping you out. They will get the good feeling that comes from lending a hand to someone in need. Draw a line in the sand I hate to think that someone may have purposefully made you feel like you were a burden or contributed to the emotional weight of hepatitis C. If anyone has said that to you, it can really hurt. These kind of people don’t understand how to give and take in the human race. You’re a little ahead of them on how to live in harmony with others. Sometimes we have to walk away from people like that. It can be very hard, especially if it’s someone you love. If they are creating a sense that you are a burden, you have to back off for a while and give yourself some space. Maybe that’s all they need too, and you will reconnect later. Don’t be afraid to step away until their attitude changes. Find patterns when you carry emotional weight If you are apologizing all the time, it can be a sign. If you let it go too far, you may begin to experience feelings of sadness or depression because you don’t feel like a valuable human being who deserves love. Eventually, you can get your sense of self worth back, even if you have to put distance between yourself and someone who feels like you’re a burden. You deserve to have safe connections with others while you are dealing with health problems from the hepatitis C virus. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] This is a topic that makes us all nervous, and understandably so. Pondering the end of our own life and those whom we love is a very difficult time and not an easy subject to take on. But, I felt I should try because in my own life, and the lives of all of us, we have experienced loss and for some of us we have faced it down ourselves. Loss of loved ones I am no grief expert or counsellor, or a psychologist, and I never suppose to have the best insights or advice. The fact is that like most of you, I have lost people close to me in my work in hep C, I have lost too many over the years to the end result of living with hep C for years and having advanced disease as a result. We have seen an increase in people losing their battle, and it has been very difficult for me but is much worse for those who are partners, spouses, friends, and family. Like you, I have experienced loss and felt grief in my life. My parents, my brother, a first girlfriend, dogs, and friends I cherished, and many others have passed in my life. It has never gotten easier and I do not expect it will. Each loss is different, and how it affected me was as unique as each of them were. Finding help and support As I mentioned, I am no expert on end of life and cannot tell anyone how he or she should deal with loss other than to say that in my own experience it is a healing process. At the risk of sounding cliché, it does get easier over time. Not that we ever forget those who have passed, because like you I never will forget those I have lost. If you have faith as part of your life, you have something, which can help to guide you, and support you in your time of loss. Not all people have a faith to rely on and some of us will make constructs that can support us in similar ways, right or wrong. There is no rulebook or perfect guide, at least I would be suspicious if someone suggested there was a one-size fits all guide to how best to deal with grief. Seek help if you need it, and sometimes, we need help, it is sometimes the best thing we can do. Reaching out to others can be a part of healing and better than internalizing our feelings. Please don’t feel guilt; it is a destructive walk with nothing positive to gain. "If only I had..." never leads to a good place. Surviving loss and going on to thrive in your own life is the best outcome in an otherwise sad time. Another cliché is that time heals all, and there is no set time in my experience, and grief is a process that takes time. Give yourself that time to heal. You will feel better, and the weight of loss will lift. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"]

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