Meagan is a young, 40 year old, woman with a young daughter. She faced sudden liver failure in 2016 which very nearly killed her. She is much improved but deals with many of the challenges common to liver disease patients. The thing that makes her so special that we are devoting an entire section of our patient stories to her is that she is a gifted writer who is telling her story in hopes that it may help others with their personal struggle. We hope you will spend some time with her story and we invite your comments.
This is the outline of her story. The posts not bolded are coming in the future.
Outline: My Journey through liver disease hell
Post 1: Introduction post. Who is a Cirrhosis Patient? In this post I’ll give an idea of who I am - as a person, and as a cirrhosis patient. The post will give an idea of what kind of storyline will be coming ahead. I hope to condense my story, giving a brief intro of how I was diagnosed, to where I’m at today, without a ton of detail, but enough so that someone reading will have some background going forward into the rest of the following posts.
Post 2: The struggle to get a diagnosis. In this post I’ll share my story of getting diagnosed with cirrhosis, and how incredibly difficult that was. All of the obstacles, all of the missed opportunities, all of the doctors who dismissed us. The frustration now, looking back, and what I wish could have been done differently – and the things that I wish doctors would think about and change now, in how they care for their patients with liver disease, so that they could do better.
Post 3: How it feels to have a new diagnosis. The roller coaster of feelings that comes with a serious diagnosis. The lack of information from the doctors. The process that a patient like me goes through, trying to learn how to take care of themselves. The fear, as you learn how to survive in this new world of cirrhosis where you get conflicting or no useful advice.
Post 4: Caregivers. It has to be harder on the caregivers than it is on the patients! I want to share some of how hard it is as a patient to rely on someone else. And I want to share what it’s like from my mom’s point of view. Most people don’t get what taking care of a cirrhosis patient is really like day to day.
Post 5: Relationships. How cirrhosis changes all of the relationships around you – it changed everything for me. As a mom, with my family, my daughter’s dad left, so many friends don’t know how to react to someone being sick and not getting better. The social isolation that comes from chronic illness. The challenges of trying to provide a normal life for a child while battling constant illness.
Post 6: Appearance: This is a big one that we recently discussed in a cirrhosis Facebook group. It feels shallow to think about, when you’re struggling with such life or death type of health conditions. But when you look in the mirror, and you don’t recognize yourself, due to weight loss, or the weight gain in odd places from ascites or edema, the hair loss, etc. That can really damage your self esteem at a time when you’re already really fragile, and it seems to be something that a lot of us deal with, but are embarrassed to talk about.
Post 7: The health care system. This is a major frustration for anyone with a chronic health problem. But with cirrhosis, it brings extra frustrations, since there are so few hepatologists, and liver disease isn’t well known by other doctors at all. How I wish that doctors would remember that we, as patients, need to be a part of the team, since we are the ones who will be seeing multiple specialists, we are the ones who need to be able to be proactive about our own health, we need to be able to know enough to take care of ourselves… yet so often doctors treat us as the bottom of the chain, as though we don’t need to know about our own results or health. I’m not sure who all will read my posts, but I’d love to share my ideas on how the system could work better 😊
Post 8: The shame of cirrhosis. I dealt with this right away. Even though my diagnosis is not related to alcohol, that was everyone’s immediate reaction – “I didn’t know you were an alcoholic?” And, even if someone is, that’s still a terrible thing to say. There needs to be more education about the many, many ways to get cirrhosis. So that people don’t have to feel ashamed of their diagnosis. Because too many feel that way. It keeps me from talking about my diagnosis.
Post 9: Loss of identity. When you deal with chronic illness, you lose so much. And those things all add up to losing your sense of self, in a lot of ways. You don’t feel useful, you lose your place in the world, you don’t know where you fit in anymore.
Post 10: Finding a new normal. After everything that I’ve been through, life is still good. The hard things make me appreciate the good things even more. Once you get over the initial shock of diagnosis, then the early stages of fighting to get your health stable – you get into a routine, you have to accept that you will not “go back to normal” again, and you start to adjust to a “new normal.” And that’s when you start to live again.
Post 11: Living with cirrhosis. What it’s like to live with cirrhosis. Accepting the uncertainties. Learning how to be hypervigilant with your health – without becoming a hypochondriac – is a difficult balancing act. It’s no use being healthy enough to live, if you’re not going to LIVE. So, you learn to do both.
Post 12: Finding Hope. Cirrhosis is a journey. And medicine and science is always changing, we’re always learning new things. I think that just as each individual patient can make huge improvements in their health by learning and making lifestyle changes – cirrhosis care as a whole is going to have huge improvements in care in the coming years too. There are a lot of things to be hopeful about, and positive about, and I want to share those things to close out the series. And definitely remind people to be organ donors!!