![]() ![]() I know I fall into this category, I'm fed up with lupus, so I’d be pretty sure my friends would get sick of hearing about it too and frankly complaining about it doesn’t make me feel any better, if anything I feel worse, so my answer is to keep it to myself. We also don’t want to be known as the negative person that complains all the time. Some people feel weak having to admit they’re sick yet again and not coping well. As if you wouldn’t know about it, don’t they think we have a finger on the pulse of any new developments in treating our illness? The problem is that with the advent of ‘Dr Google’ people have become ‘experts’ in medical conditions and have read some nonsense about something that will cure you. We don’t want to admit how we’re feeling incase we get an offer of yet another miracle cure. Or worse when you say you’re exhausted and they say ‘oh yes, I was out last night very late, I’m exhausted too.’ In this case we’re avoiding their judgement or the look of disbelief we’re likely to get. People don’t understand, they sometimes don’t believe we’re really sick when we look well. ![]() Try and agree beforehand how much you want to divulge, if it’s a partner they will likely see you in pain often and want to help, if you don’t want to keep explaining then the code system would work well. I’ve heard of people that have come up with a code where you give a number between 1 and 10, so that the other person knows how you are actually feeling. We train ourselves to tell the lie in a believable way and hide symptoms from them so don’t they feel guilty for not knowing. When it’s a loved one, we might not want them to worry or be the reason they’re sad. What if it was just a polite question and they didn’t really want details of how I feel? If I tell them the truth they’re put on the spot and might not know how to respond, possibly feeling uncomfortable or stressed then I’d feel stressed too. I’d have to think about lupus 24 hours a day and quite honestly that wouldn’t be good for me at all. Can you imagine what it’s like to be me? I work in in the lupus field and have lupus, so I explain it to people all day every day, I don’t really want to have to talk about it when I’m not working too. Some patients never feel ‘fine’ so would have to explain again and again how sick they were. Unlike other illnesses we don’t see the doctor, get some medication and are cured, our illness is for life. We’re sick for the rest of our lives and frankly it’s exhausting to keep telling people how you feel/what illness you have etc etc. Eventually, we get to a point where we don’t want to keep explaining. Often when you first get a diagnosis you do take time to explain, over and over and over. My stock answer, even with people I know well, is ‘Oh I’m fine thanks’ and I’d be pretty sure a lot of other people with lupus are saying the exact same thing. One of the things people say most often when they see you is ‘how are you’, an innocent enough question to most people, but when you have a chronic illness are they asking exactly how you are, or just being polite? How many people want the full low down of how we’re actually feeling? ![]()
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