Having friends to share my disease with, so we will go farther together

When I first learned that my liver was failing, I didn’t know anyone who had what I had: cirrhosis from fatty liver disease, specifically, metabolic dysfunction-associated steatohepatitis. I felt alone. Finding someone, anyone, to talk about my disease took time, but I eventually found what I had been longing for: hope.

It’s hard when you or a loved one is diagnosed with liver disease or any chronic or rare disease. I just wanted to crawl back into my bed — at home and not the hospital — and hide. It takes time to process a diagnosis like this, and it’s understandable to just want to run away.

After a few weeks of this and shortly before I had my first major complication, I had an epiphany. It came from an African proverb that says, “If you want to go fast, go alone; if you want to go far, go together.”

Gathering my liver support crew

Tentatively, I approached a few Facebook support groups for people with liver disease. I was always worried about being judged, but after joining a few groups, including a local one facilitated by my doctor’s office, I started to feel a sense of belonging. We discussed common symptoms, DIY hacks for dry skin, nausea, and other constant reminders of our disease.

It was all I seemed to need in the beginning. But I soon realized that some of the people in my life, my family and friends, also needed this information. It can be overwhelming to manage a chronic disease all by yourself. It helps to appoint one person to be your “tracker,” someone to check your meds, look over your appointment schedule, and make sure you’re eating right and getting exercise. My tracker was my sister.

Most days in the beginning, I would text her to tell her what was going on with me. Now we share a digital calendar. My sister lives two hours from me, but she has lovingly showed up to all of my major appointments or just when I need her to be there for me.

We also talk on the phone often. I’ve made those conversations mandatory, both for my physical and mental well-being. Because we talk regularly, my sister can quickly detect any changes in my behavior which can save my life. For example, I once had ammonia levels that were off the charts and wreaking havoc on my ability to think and talk.

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If you are facing a liver transplant, it helps to remember that the stuff you know is more than your loved ones know. You should ask them what they’d like to know, but also tell them what you need them to know as it relates to your care.

For instance, if you have a living will, a document that states your final wishes and how to proceed, you’ll need to ask someone close to you to be a part of ensuring that your wishes are honored if you become incapacitated. Same goes for powers of attorney, and your final will and testament. Make it easy for your family and friends to find these.

The other day, my doctor invited me to a symposium on liver transplants. I always extend an invitation to my circle of companions so they can learn if they wish. I am never pushy with anyone. I’ve had a few friends take me up on this offer. It is great when you have potential donors lined up, but aren’t comfortable telling them yourself about the physical effects after surgery. Attending events like these enables them to ask questions from experts.

It takes a village

My last few lines of support are from my neighbors. Two years ago, I had a backward fall down my stairs and ended up doing the splits, something I’d never achieved before. That day, I injured my shin, broke my femur in three places, and lost a lot of blood before the paramedics had even arrived. Without the help of a neighbor, I might not have made it.

While I was in the hospital, my neighbors had helped my sister get the first floor of my house rearranged, as I couldn’t climb stairs. Neighbors delivered meals, brought in my mail, cleaned, and offered me comfort and a sense of safety. I had only been in my house for a little more than a year, but they took me under their wings. My neighbors are now my allies and it’s really nice to bring my little block together, which is what my accident did. When you’re in crisis, you will be surprised sometimes by who shows up for you.

Find and create your support system, whatever that means to you. Express your needs, but listen to the needs of others, too. Sometimes people can only give us a little bit of time, and we need to be grateful and respectful of that. If you have something to offer in return for their help, offer it. Just be open to those who do step forward to help. You’ll go faster alone, sure, but you’ll go farther together with a good partner at your side.

Note: Liver Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Liver Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to liver disease.

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