AIH diagnosed in 2013. Every day is a battle. My friends say 'are you better now' so tired of having to explain this is as good as it gets. Fatigue and pain the only constants in my life. How do I cope with comments like ' you don't look that ill''. Every day is a struggle, still working full time but feel like giving up most days. Any help on how to respond to comments about this 'invisible illness' would be appreciated.

12 Replies

  • This is something which some people have found helps , its called the spoon theory . Written by a lady with Lupus, which is an AIH disease, but many factors apply to any chronic illness.

  • Thank you for video. I hadn't seen this before and it will definitely help.

  • My pleasure.

  • brilliant. x

  • It's tough. I don't like to complain, when most people ask how I am I say OK the worst my response gets is I feel a bit squiffy. Outwardly other than a slight yellow undertone I look fit and healthy and with everyone telling me I look well I often doubt myself that what's going on inside is actually quite serious.

    We are visual animals. We see someone cut we know they are hurt and how to deal with it. When someone gets a cold or the flu we see the red nose, the coughing and sneezing and we've all been there and felt rough and know what it's like. But when you can't see anything wrong with someone. When you've never experienced anything similar it's hard for people to understand. They try. But they will never really know. They ask how you are and maybe you say you're feeling tired. We all know what that really means but to them it's ok you're tired. Get an early night, have a lay in, you'll be right in the morning. People don't understand and I've yet to find a way to explain it to them. The best we can do is understand that they don't understand and in a way hope that they never will.

    Speak to those that do understand when you're feeling down, either on here or maybe with a local support group.

    Your friends and family don't mean to be blasé about it. But without being able to see the problem they just don't get it. Those closest to you will try but they'll forget from time to time. Be patient with them.

  • Unfortunately people who don't have a chronic illness can't understand what we're going through, especially when there's no real visible signs of it. I have comments all the time about how 'well' I look, or 'lovely colour have you been away' but that's just the jaundice glow lol. I too work full-time but had to finally give in 4 weeks ago and take some sick leave. I hit my brick wall and boy did I go slamming into it! But stay positive, take life by the horns and enjoy the good bits 😊

  • Hi Raqs67. So sorry to hear how things are for you at the moment. I hope everything works out for you. Thank you for you support. Take care.

  • I say 'have you heard of Chronic Fatigue Syndrome' (most people have) and then add 'its like that'.

  • Thank you Bolly. Great advice as always!

  • Oh I wish I had an answer to that - I have AiH as well as PBC and no one understands how hard It can be except people on here :)

    Most often when people ask "how are you doing " I judge wether to lie as a common response "oh fine" or be truthful "today's not really a good day" depending on who asked .

    If someone I was friends with said "you don't look that sick" I'd probably respond with something like "that's good - at least I look okay - just wish I felt okay"

    But if it's an aquantaince or someone I didn't really know who said that "you don't look sick" I wouldn't bother responding because it doesn't matter to me what they think. It matters that my good friends are in the loop (if they ask) and they'll take the time to understand as best they can

  • Thank you Becca. I have learnt a lot this weekend. I'm going to work out a new strategy based on all the good advice from here. It's so easy to say 'I'm fine or not too bad'. As you say identifying the audience is the key. Thank you for your support.

  • always ! :) HUGS! I struggle in silence a lot - because I don't want to say much as there aren't many people who blindly understand something they can't "see". But true friends will : )

    also, you're an SLP? I'm a CDA : ) where do you live? Im in Canada

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