Meagan post 5

I once looked online for the actual definition of cirrhosis, and there was a line that stood out to me - “Cirrhosis changes the structure of the liver and the blood vessels that nourish it.” I realized that line described more than just what cirrhosis does to your physical self – it also describes what it does to your mental well-being. Cirrhosis changes the structure of your whole life and the relationships that nourish it.

During a health crisis, people are usually quick to rally around you. They offer words of support, bring flowers to the hospital, and bring meals to you at home after you’re released. But cirrhosis can be a hard disease for people to continue supporting you through. After an initial crisis, I didn’t “get well soon,” as so many people encouraged me to do. And since cirrhosis is a disease that very few people understand, they don’t know how to support you. Unlike cancer, there is no treatment or an end goal of a cure. It’s just an exhaustingly unpredictable road of better and worse and then better again. After a while, I think friends and family get confused, or beaten down, when they never get the answer they want to hear when asking if you’re “better” yet. They yearn to go back to normal, to have your relationship go back to its familiar structure. But once you have a cirrhosis diagnosis, life eventually finds a “new normal,” – but it never goes back to the way it was.

The first big blow was when my daughter’s dad left, after 11 years together. He didn’t leave just because I was sick, we’d had a history of struggles. But visiting me in hospitals, over and over, watching the girl he fell in love with, who ran her own business, loved to socialize and travel, who was full of life and adventure– watching me turn into someone who was bedridden, couldn’t work, couldn’t do much of anything at all for a while, seems to have been too much for him. I hear often from caregivers that taking on that role with a partner changes their dynamic so much. Most people take their vows seriously, in sickness and in health, and would never dream of leaving. Yet, their role as caretaker begins to overwhelm all of the other parts of their relationship. It sometimes leads to your loved one seeing you as a patient, instead of their partner, which can really drive out the romance that brought you together.

Friendships will change too. Cirrhosis is a lonely disease, in so many ways. It comes with a stigma, of people judging you as a druggie or drunk, even if that isn’t the path that took you towards your diagnosis. Educating people on the many varied ways that people can have cirrhosis, explaining what NASH is, or informing them of the genetic or autoimmune diseases that can lead to cirrhosis, is just often too exhausting. And after a while, it starts to make you feel “other.” It’s hard to relate to your friends and their lives, once you can no longer participate in the things you used to do with them, go the places you used to go, or even have the energy to keep up with them. You drift apart from more and more people, at a time of life when you need their support the most. Your friends continue on a path that you no longer can travel with them.

Luckily, I’m blessed with an immediate family that is the absolute best. They see that I’ve had to change my life drastically to accommodate my diagnosis, and they do so much to keep me afloat. They pitch in help when I need it, they willingly have more family events at my house where it’s easiest for me attend, and they are super understanding when I’m unable to go to events I’ve been invited to. And that helps, so much, having at least a small circle of understanding around me.

The other thing that has helped, has been building an online support network. It took me awhile to really accept that I had woken up sick one day, and wasn’t ever going to get better. I didn’t want to identify with my disease, because I didn’t want to ACCEPT my disease. But once I did, I started searching out other people like me. Other patients. People who would “get it.” Where I didn’t have to explain what living with a chronic illness was like. Where I didn’t feel like such an outsider. I first found that community in Facebook support groups for cirrhosis patients. Then I started searching out other chronic illness patients living with different types of disabilities and diseases on Instagram and Twitter, where I could see examples every day of people living their best life in spite of scary diagnoses. And these people, most of whom I’ve never even met, have been my lifeline during my hardest days.

The other person who has been a lifeline, my sunshine when I need it the very most, is my daughter. She was only 6 when I was diagnosed, she’s 8 years old now. After her dad left, my health went downhill quickly, right as she was starting kindergarten. That was a heck of a lot of changes for such a little girl to go through. It hurts my heart, that she feels like she has a caregiver role in my life, when it’s ME who is supposed to be caring for HER. She worries, daily. She makes sure I remember to take my medicine on time, she’s super supportive of our dietary changes and the lack of soda and sugary snacks that her friend’s pantries have, motivates me to get up and go for evening walks, and gives me a reason to keep doing everything I can to stay strong and healthy and living my best life. I can’t take away all of her worries, but I can teach her that there is joy even during hardship, and that you never give up, no matter how hard life gets.

Being diagnosed with cirrhosis changed me physically in so many ways, and it definitely changed the path I was on, and affects the structure of life in this new normal I’ve created for myself. But it’s also made clear which relationships are the ones that truly nourish my soul, and I’m grateful for the people who have stuck around to walk this new path with me.

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