Family Life and Parenting with Hepatitis C

Raising kids is hard these days. Whether you're a single parent, in a blended family, or in a relationship - it can be a struggle to get along. When adding an illness like the hepatitis C virus, misunderstandings are common. Words get thrown around, accusations can fly, and before long, battlelines are drawn. Life seems so unfair when you’re sick and there is tension with your kids. Four important steps to take with your kids: Listen with your heart Try to get your mental arguments out of the way. You may have a long list of all the things they have not done to support you while getting ready for treatment. If the truth were told, you may go so far as to mentally rehearse that list of grievances. Then one little thing happens and BAM! You fly off the handle and it gets nasty. Picture your child as a little kid They may be acting like one right now. Get out an old school picture and keep it where you can see it. Remember how innocent they were? They didn’t understand adult issues at the time. I personally believe there is no way that our adult children can ever comprehend what we’re dealing with. So, treat them like a grade schooler. Just don’t tell them that. They honestly think they are behaving appropriately for the situation. Be the parent I know - when we’re sick, it’s not easy. We may have spent most of our adult life taking care of them. We get the idea that when we’re weak and sick, they should step up and return the favor. They may offer to help to degree that they can. We simply have to be mature, no matter how weak or fatigued we are. Forgive them It really doesn’t matter who is right or wrong. I don’t want to be “right” and not have my daughter in my life. She doesn’t want to be that adult woman who can’t talk to her mom. By looking at it from the big picture, we can begin to shift the relationship to one of forgiveness, healing, and trust. Once, I needed my daughter to help me. I was having side effects. I worked myself into a tizzy and wanted her to come over ASAP. When she didn’t, I was so hurt. Then, I became puzzled as to why she didn’t jump. Soon, I felt sorry for myself and acted like a victim. I called her and was bossy and hateful. She wanted off the phone with me. I texted some whiney stuff. I’m not proud of how I acted. In the end, some apologies and explanations helped to open communication. Final thoughts When your kids don’t understand hepatitis C, it is because they don’t have it. What they might have is their own story about how they wish you were not sick and could be there for them more. By listening with your heart, talking to your child as though they were your little one again, stepping up and being the parent, and beginning a cycle of forgiveness, everything can begin to heal. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] I needed help balancing family life during hep C treatment. When I was treating, I ended up moving in with my daughter and grandkids. We faced challenges, and I'd like to offer some friendly advice about how we were balancing family life during treatment. "How can I balance family life during hep C treatment?" Know that there will be stress and be prepared, so you can stay calm. Identify your needs, and have a conversation with your family about them. I wrote them down on a sticky note for all to see: Meals, Medications, Myself. First, know that there will be stress. Let everyone know that you need certain foods that are good for your body. Explain how important the hepatitis C treatment medications are to help you live longer and heal your liver. Finally, take good care of yourself. My tips If you are balancing family life during treatment, this video will show you some tips I used. For example, use a calendar, or other visuals that will help everyone understand that there is an end to treatment, and you will begin to feel better soon. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"],Navigating life with a medical condition can be challenging. Adding children and parenting stress into the mix can make it feel like an impossible task at times. No matter where you’re at in your battle with your condition, and what your personal challenges are, there are ways to try to plan for the struggles of parenting. Although each individual parent and child will have their own needs, there are some common tips for families of all shapes and sizes. 1. Find alternatives One of the biggest frustrations of parenting with a medical illness is the realization that you might not be able to be the parent you thought you would be. Hep C fatigue may prevent you from being the softball coach or from going to every piano recital. You may not be able to cook dinner every night or limit screen time as much as you would have liked. And this is all completely okay. Many parents find strength in being able to create alternatives that show just how much they care, while respecting their personal limits. For example, if you can’t play catch, maybe it’s a good night for a movie, popcorn, and pajama party on the couch. If you can’t make it to a dance performance, watching a recording afterwards with your child while they give you a special encore may make them feel just as loved and appreciated. As long as you're finding ways to receive and provide joy, any alternative is worth trying. 2. Create open lines of communication Parenting with a medical illness is not a task you can do on your own. You may need help at times. Letting others know what’s going on and asking for help is always a good idea. This is especially true for your immediate family. Telling your spouse/partner or children what you can and can’t do, and why you need help on certain tasks may help set realistic expectations and provide opportunities for others to step up and take some of the responsibilities off of your shoulders. 3. Enlist support There may be times where you just can’t function at the level you had hoped. When this happens, having a support system that understands what’s going on and who can step in (whether it’s a partner, friend, or caregiver), might give you the break you need to refill your tank and jump back in where you left off. Your child may even be involved in your support system, within reason. For example, if your doctor recommends that you walk around the block once a day, you might be able to make this a special activity for you and your little one to do together. 4. Make time for self-care Although taking care of yourself may be the last thing on your mind some days, it’s important to take time for yourself when you need it. Even if it’s five minutes a day to meditate, take a hot shower, or put on real clothes, it’s critical to make sure you're taking the time to fill up yourself. You can’t pour from an empty cup when trying to take care of others. 5. Pay attention to your mental health Along with self-care, mental health is another issue to not let fall by the wayside. Life with hep C can be challenging, stressful, and scary. Feelings of anxiety and depression can creep in all the time. Being open with your healthcare provider about your mood, seeing a counselor, or even going to couples or family counseling may help you foster strong mental health and create a space for open conversation with those closest to you. 6. Be mindful of overexertion When parenting, it’s often impossible to not overexert yourself. However, when living with a medical condition, one instance of overexertion may lead to days of recovery. Whenever possible, make a list of important or strenuous tasks that need done, and try your best to spread them out over a longer period of time. For example, if you have several chores that need done before the weekend, you may try to plan to clean the floors on Tuesday, research school districts on Thursday, and go grocery shopping on Friday, to avoid doing too much at once. You know best what your limits are, and it’s important to listen to your body and try to follow them whenever you can. 7. Accept and plan for unpredictability Parenting with a medical illness is all about accepting a new normal and finding ways to embrace the unpredictability. A day when you planned to go on a big outing may be the same day your body is telling you that you shouldn’t get out of bed. If this is the case, it’s important to be realistic and reset your expectations. If you have to skip the outing today, in favor of going tomorrow, that is okay. As long as you’re open with your family about why you need to adjust and that you’re still committing to doing what they were excited about, they will understand that you still love and care for them. It may even be helpful to have a “bad day secret weapon” for use in dire situations to avoid disappointment. This could be a toy or video game stashed away that you know your child has been wanting or the offer of some extra screen time. Having a backup plan that you know your child will love may be enough to put both of your minds at ease. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] How much is too much to tell your kids? I have faced this same dilemma not but 8 years ago when my children were 8 and 14. I was given the news that my liver condition worsened from stage 1 to stage 4. Not only was I personally having a difficult time processing this news, but how on earth was I going to explain this to my children? Learning from my experience as a child I will say that growing up with a mother in and out of the hospital with issues related to her transplanted kidney, I know the stress a young child feels witnessing this. The fear of losing my mom was real. I had to grow up much faster than those my age. I also dealt with parents who tried to hide what was happening to my mom. As a child, I could see through the cloud of smoke they were trying to fill me up with. I could hear the late-night discussions about her condition and read through the pretending things were normal actions they played. I respect they were trying to protect me but as I grew older, those separation fears only grew because I was not allowed that time to worry about her. I was left in the dark with my own imagination about what was going on and for me, that was far worse than just telling me the truth. When I got this dreaded news, I immediately began thinking of when I would sit my kids down and talk with them about what cirrhosis was and the possible outcomes. I did not want to burden or heighten fears in my kids by doing what I did as a child – making up worst case scenarios in my mind... Honest and straightforward information Setting them both down, I had explained and shown them pictures of what a good liver looks like and now what mine possibly looked like. Their eyes wide open as if to soak each detail in, I was calm and to the point. Meaning, I did not sugarcoat things. I explained I needed to be treated for hep C in order to stop the attack on my liver. I faced their questions head-on. The ones about death... yes, I explained there is that possibility But, I stated that I was feeling strong, I was feeling positive, and I know I can beat this. I told them that I would not hide anything from them and that as a FAMILY, we will face this together. I shared that for me to beat this: We all must remain positive and if anyone starts to be sad or worry, we come together and talk about it. I also said, that mommy will need that extra time to rest so that the treatment could do its magic. Giving each of them a task in my care helped them feel they had control over what was happening. One would get me the package with the shot (for treatment) and the other would wipe my belly with an alcohol swab. It was during these times that our strength as a family grew and their fears were eased. Fighting hep C as a family Today, as each new health issue arises, I continue to stand strong in my fight and know my children growing up will have compassion for the sick, empathy for those suffering, and courage to face their own battles in life. After all, we stand united behind a woman who fought so hard to live, have children, and a zest for life. “Not without a FIGHT! ~HCV~©” [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"],In this series, we discuss causes of anxiety for those facing physical illness and its side effects. Phrases in bold are the words of our community members across various conditions on what it's like to deal with these anxieties. When you ask anyone what’s most important, they’ll often put family and friends at the very top. Mutual support is an important part of a relationship: you can support them when they’re in need, and they can in turn be there for you. This becomes a lot more complicated when chronic illness gets in the way. It can make it harder for others to understand what you need. Sources of anxiety Community members mentioned changes in relationships with partners and other family members, their children's risk of contracting their condition, feeling like a burden, and much more... “My family don't understand” / “family will get tired of me” Some feel that their condition is downplayed by their family, or that they understand some challenges but not others. They may be able to understand physical symptoms or side effects, but be less understanding of the emotional toll. It can be hard to talk to a family member who doesn’t want to face your diagnosis or doesn’t believe what you’re telling them. “Being able to look after my son” Many community members talked about letting their family members down, especially their children. Parenthood becomes a big part of your identity, and chronic illness can bring added stress and even make you feel like you aren't up to the task. When either you or your children are dealing with a painful and frustrating condition, it's easy to feel like things are out control or that you aren't doing enough. ”The feeling of not being able to provide for my wife.” You might feel pressure from others or yourself to be strong or tough and provide financially. Taking time away from work to focus on you or your family's health can bring stress to the family, and even leave you feeling guilty. You may need to find a new balance in order to prioritize health concerns. "Dating!!!!" If you’re dating or in a new relationship, there are a whole lot of other expectations. Not only do you worry about what to wear or what to say, you struggle with when, if, and how you’ll explain your condition. It’s a hard balance to know how much you'll share. You may want to be open, but fear scaring them away. This can be especially hard when you've been hurt in the past. Seeking Support It’s important to keep lines of communication open when you can. Many people described the love and support that comes from sharing their frustrations with those closest to them. There are times, however, when you may want to vent and connect farther from the pressure of home. Here’s a few ideas for finding support: Communities like ours and support groups and nonprofits for your condition can be full of people who get how hard it is to balance family life. Not everyone is open to family and couples counseling, but for some it can help to gain perspective on the challenges you’re facing. Ask how your loved ones are feeling, and encourage them to seek support if they need it. Making sure they're taken care of can open communication and ease stress. Karen's article on telling friends and family that you have hepatitis C Kim's article on saying "no" [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"]

Family Life and Parenting with Hepatitis C

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