How NASH Affected My Social Life

I wanted to share my story of how living with NASH has affected my social life. How living with an invisible chronic illness can bring judgment and a lack of understanding, not just from strangers, but from your own family and friends.

I was diagnosed with stage 3 nonalcoholic steatohepatitis (NASH) in December 2022. I remember feeling very overwhelmed after my diagnosis. I was 28 years old and had just learned that my liver damage was so severe that, if it continued to deteriorate the way it had been, I would be dead in 5 years.

Navigating a challenging diagnosis

Luckily, I was not alone whilst receiving my diagnosis; I had my partner with me for support. I honestly believe that if I hadn't had them there, I would have had a completely different experience, and not for the better. I remember feeling like I was watching myself slumped in that chair, with puffy red eyes from the tears that were falling, receiving the news like I was watching a movie.

Naturally, after learning about my diagnosis and researching all of the ways I could help rejuvenate my liver, for example, one of the main things I had to change was my eating habits and lifestyle choices. So, of course, this meant watching what I consume and making better choices while out with friends and family. This became a significant part of managing my social life with NASH.

Deciding not to drink

I stopped drinking altogether. I feel as if some of my friends struggled with this and took it as me becoming less "carefree" than they were used to. Unfortunately, it was not only social activities that were becoming an issue, but also the fact that certain friends and family members, not all, but more than they should have been, judged me and my chronic illness.

The invisible realities of chronic illness

I have realized that since being chronically ill, a lot of people cannot understand what isn't visible. At times, I would rather have had a broken arm with a huge pink cast than the fatigue, back pain, nausea, and swollen legs I experienced with NASH. I feel as if people would be more understanding of my health. So, on those occasions where I had to use every single bit of energy in my body to get up and get dressed, to go to an event, only to be criticised or judged because I am sitting for too long, or not dancing enough, was very hurtful and made me feel guilt and shame—a feeling I would not want anyone to experience.

How NASH impacted my social life

As a result of the judgment and lack of empathy from my own friends and family, I started attending fewer meetups and family events. I couldn't stomach having to deal with my nausea and others' peering eyes and questions like "Why do you have that walking cane?" and "What's wrong with you?"

I also used to receive many naive and offensive questions. Asking and seeking more information is fine, as long as the person you are asking is comfortable and you are asking non-invasive questions. Everyone's story is different, and what some may be comfortable with, others may not. So, remember to be considerate and kind while also listening and learning from your loved one.

Navigating social challenges

My journey with NASH has taught me resilience and patience, and has highlighted the importance of empathy. To anyone dealing with a similar situation, know that your feelings are valid, and you are deserving of understanding and support. Surround yourself with those who lift you, and remember that you are stronger than you may think.