What is the most frustrating or difficult aspect of living with NASH (NAFLD)?

@Courtney_J I think you hit it on the head for me with the lack of knowledge. I've felt very unsure and in the dark about it since I was diagnosed. I feel like they don't really know how to treat it so you just treat the symptoms or related conditions. I had NEVER heard of it in my LIFE before I was diagnosed and my doctor didn't really have any advice for me on how to move forward. 

@MJ2015 Yes I totally agree. I think "frustration" and "confusion" are two good words that sum up my overall experience with this disease. 

For me, it's the anxiety, honestly. I had no idea I had this and that there was anything wrong with my liver. I feel like I've been put in a boat with no oars headed for Niagara Falls. I have no real treatment for it, no information, and I know that for all I know behind the scenes it could be getting worse. Hoenstly sometimes it keeps me up at night. 

Been dealing with NASH for a few years and yes, the general lack of information (or conflicting information) you find out there.  I will say I felt my absolute best pre-COVID when I was going to the gym 3 days a week and eating healthy (low salt, low sugar).  But you keep hearing different things (like the recent news about Stevia and NAFLD/NASH.  I remember when I was told I had a fatty liver (15 years ago in my 30s).  I asked if I should be concerned, and my doctor said NO, it's pretty common.  Ten years later I had liver damage and NASH/Cirrhosis.  It's VERY upsetting.

@Courtney_J Mine would be having Nash and ovarian cancer and the treatments affecting my liver enzymes and what and how much chemo I can receive. 

I been dealing with NAFLD for some time . I am stage 3-4 fibrosis and it isn’t getting any better. I stay in pain , fatigue all the time and nothing from the doctors. 

Yep! I agree with everybody here.  Same frustration and confusion, no advice from doctors except the classic « eat well and exercise ». It’s my biggest frustration: I eat well and exercise for so many years, even before being diagnosed around 2012 or 13,  I have no cholesterol, no hypertension, no obesity (bit overweight), no diabetes, what more can I do? I’m completely at loss and a bit frightened by the risks of developping cirrhosis or worse.

I’m still in hormonothérapy from a breast cancer 4 years ago and I suffer fatigue from Sjogrën syndrom since 1998(diagnosis date) and consequences from cancer and perhaps even from NAFLD surely doesn’t help! Exercising is really difficult now as instead of giving me energy like it used to do, it left me more tired. Disheartening!

At least, I feel less alone since I discover Carenity!

At least, with my other conditions, I can’t be accused to have made bad choices concerning my health, but that seems a sub text at each exam  (taco) from the specialist that reads the results. They almost spit when they say : you have a fat liver. Nobody should be judged because they have a disease! We all know people who have unhealthy living mode and stay healthy and other that take care  to eat well and exercising and are very ill! Life is unfair. No need to be judged when in fact doctors don’t know the why and the how of fat liver! And the interaction with other conditions.

@WendyR I understand. I am so tired all the time and in a lot of pain. There is not much you can take due to it hurting the liver more. I think this is so frustrating and the doctors do not tell you much about it. I did not even know that diabetes could cause so many problems.

I have found out now that there are enlarged lymph nodes on the head of my pancreas. Went to the doctor on Monday and was told everything was fine. The doctor sent me down for labs. The next morning, I was advised I was being referred to a transplant facility. She said my MELD score was 17. How could that have come on so fast., I would thing they would inform us that there was something wrong. So confusing.