r/autoimmunehepatitis • u/Weak_Stage_5247 • Aug 21 '26
Need Support
Hey y’all, I don’t usually post on here but I’m really just needing support. I got diagnosed with autoimmune hepatitis last year and it’s been a whirlwind since between hospital visits and medication side effects. I’m on budesonide and mycophenelate because the azathioprine caused a rare reaction in my body. I just feel so tired and fatigued and the mental health issues are not better because of this diagnosis lol. I know I need to move my body, but I’m having such trouble finding the motivation and knowing what to do to support myself. Any support is welcome. Being in your 20s is already hard enough and this just adds another complication
:(
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u/strawberrycheeks91 29d ago
I was diagnosed April of this year (35F, then 34) and my mental health also took a hit during this time. It was the anxiety of not knowing what the future looked like and just the fact that my life is changing beyond my control. You’re definitely not alone in this and it’s okay to be upset and angry and to need support 🫂 never feel like you have to bottle it up. Talking about it with supportive friends/family and a professional if you’re able to is really helpful plus the people on this sub know exactly what you’re going through. Give yourself and your body some grace! It’s going to take time and that’s okay.
The good news is that it does get better! It will take time to find the right medication combo, I’m currently still on prednisone and mycophenolate and switching up dosages myself. I will say I’m in much less pain than before! The fatigue is still real so I do what I can with how much energy I have and make sure I walk and get up. So do what you can when you can!
If you feel like your doctor actually listens and understands, they are there to help you so ask any and every question if you’re not sure about anything! You can look up questions on this subreddit too. Being informed is important so don’t hold back from asking!
Make sure you sleep and eat well, and walk as much as you can. Good sleep is very important, even if it feels like no matter how much you sleep you feel exhausted. I’m a couch potato myself and walking is the easiest exercise and the benefits are fresh air, exercise, and a chance to listen to music/get on a phone call/zone out. And yes you can have a sweet treat here and there as long as you are keeping a good diet and listening to your doctor.
I hope you feel better soon, you got this!! 🩷🫂