10 Things People With Chronic Diseases Like AIH, Wish You Understood
1. Autoimmune Hepatitis is not imaginary.
Just because we ‘don’t look ill’, doesn’t mean we don’t feel it. AIH is a disease of the Liver and can cause fatigue, general feeling of ill-health, tendency to tire out easily, joint pain, abdominal discomfort and the need for more sleep, to name just a few.
2. Mornings are hard.
Really hard… We often wake up in the morning feeling just as tired, if not more so, than when we went to bed. Throw fatigue and joint pain into the mix and it makes for a rough morning. (Please forgive us if we’re grumpy with you!)
3. “Sorry, i can’t, i have a doctor’s appointment” is not an excuse.
We’re in and out of the doctor’s surgery/hospital all the time. For medications, blood tests, check-ups etc.
4. We don’t want pity, but we also don’t want our circumstances to be ignored.
We don’t want people feeling sorry for us, and understand everyone has their own problems. Just please don’t question us if we say we can’t go out. Please understand that it’s not because we don’t want to hang out with you, we just physically can’t.
5. Malaise.
AKA - General feeling of illness. It’s not always easy to describe how we’re feeling, so we end up just saying we’re ‘fine’. But sometimes all we need is for someone to acknowledge that we’re not. For someone to notice. A hug or even just a knowing look will help.
6. AIH is not contagious …
Once people hear ‘hepatitis’ it can freak them out a little, which is fair enough. But fear not - you won’t catch it from us. ‘Auto Immune’ means that cells start attacking our own bodies (or in the case of AIH it’s the liver) and this is not something you can catch from another person.
7. We may not be the best drinking partners.
AIH is an inflamation of the liver which can lead to cirrhosis. Doesn’t mean we don’t like alcohol, it just really doesn’t like us!
8. Medication.
Autoimmune Hepatitis is usually treated with steroids and immunosuppressants. The side effects of these medications can change the way we feel, look and sometimes even the way we act. Steroids can make us gain weight and immunosuppressants can cause hair loss. If you could just not mention it to us, that would be great!
9. Fatigue is no fun.
I’ve mentioned fatigue before but i think it needed its own bullet point. It’s not the same as being tired. When you’re tired you go to sleep and all is well. I once saw fatigue described this way: ‘it’s like gravity is mad at you’. It’s true! I once took a shower sitting down and had to go lay down after - it’s THAT bad! If you see us like this, please just give us a blanket and leave us to it.
10. We’re fighters.
All of that aside, we just want to be treated like a normal human being. We have to listen to our bodies and just do what we can.
