Feel so down like nobody is taking me seriously!

Sorry have just come on to have a moan. I feel so poorly today, and yday. I'm in so much pain everywhere but I also just feel really down. My mum text me to see how I am. Dont get me wrong I get on really well with my parents but sometimes they just don't get it. But lately I'm just getting silly responses from my mum like 'oh well let's hope they sort you out' or like this morning I asked her something about painkillers and said I didn't know what to do and she just ignored the point, and in her response told me how my nephew is doing and how my dad has really suffered with a cold / flu. I just feel like giving up or disappearing to see if anyone notices how bad I feel?

12 Replies

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  • Hope y feel better soon,some people even some close to us just don't understand what we are going through chin up

  • It is a problem having a disease that is not visible.

  • I really feel for you. Have you seen the research on inflammation and depression? I find that when I'm having an RA flare I am very down and cry a lot. GP got me a steroid jab and crying stopped the next day. Now you cant do that too often and it doesnt last for long, but somehow I found comfort in the inflammation/ depression link. Not just me on my own.

  • Hello, I'm really sorry you're feeling like this at the moment, it's totally understandable because a lot of the time RA can feel quite isolating and like nobody else gets it unless they experience it. My "helpful" mum told me not to get to dispondent the other day when i was telling her how much my jaw hurts (she asked!) and then she went on to talk about her dog! I know she cares and it's not her fault that she doesn't know what to say, but if I'm totally honest, I wanted to kick her for being what felt like quite insensitive and dismissive to something I'm struggling with! Like you say, it makes you wonder why you bother telling people how you actually feel. I guess it's just about trying to remember that they do care but maybe don't know what to say or how to make things better, so avoidance or keeping it short is easier or better than anything else they can think of. Have you tried explaining to your mum that her comments don't help? Maybe explain to her what you would fine useful, if you know, so she can try and put that in place? She might like your input if she's finding it hard to know how to help. Really hope you have a better day tomorrow. You know where we are, try and take care (meant in the most genuine way possible!) xx

  • Aww thank you everyone. Ive managed to get out to the supermarket so that's one good thing :)

    I also worry about being off work as my manager was a bit weird when I called in this morning. She asked me if I was going to the doctor or if I'd beach tomorrow. Grr! And then someone from work has just text me to ask me about a case because the manager was pushing for an update. So I feel like I need to go in tomorrow.

    Argh. Oh well. I guess it all makes us stronger :)

  • Sometimes I cant' communicate how I feel to anyone. I'm useless! And other people are generally useless when it comes to understanding how we feel so that's another useless thing.

    When it comes to work though, it'd do to come up with some stock phrases to use. Things like "I know this disease doesn't show, but it is very painful." Just the essentials put in strong terms, factual not emotive ... anything emotive is all too often interpreted as self-pity.

    I notice that I have more sympathy for other people who have illnesses I know nothing about .... or at least acknowledge what is happening to them more readily when they say just a few choice words at the right time. That's exactly what I'm not good at! But it does seem like less is more.

  • I know how bad you feel I get this from my Dad. He just doesnt get it and thinks I can just pull myself together and starts telling me about other people. I recently lost my job through ill health and he thinks that I should try to get back to work. I think the world of him but I feel like I bang my head against a wall. dont feel bad about feeling ill, We have enough to put up with. Gentle hugs Joolz.x

  • I understand where you're coming from. I think a lot of it stems from the fact that they don't know what to say. They're worried about you. And if you're like me - I've been feeling crap for about a year now with no concrete answers - then you get people saying "Oh I hope you get answers" and to be honest, I've found most people get on with their own lives and get a bit bored. I've become a bit paranoid worrying that people will think I'm a hypochondriac.. although no-one has said that. But you know yourself how rubbish you feel. Somedays I can barely walk and I've thought of getting a stick but know I would only use it perhaps every other day which would look odd....

    Sending you hugs - you sound like you need them

  • Smellydunlin you could always use the stick to hit the people who make unhelpful remarks ha ha. I try to use the moral high ground when people say stupid or unhelpful things - update them on their lack of knowledge on how many people suffer with this ailment and how it changes our lives and the effect it has. Point out how even "famous" people suffer! When they say"l hope it gets better" or "I hope you eventually get it sorted "! "NO" I say its nevet going to get better - its never going to go away - its going to gradually get worse" its my positive attitude and determination that sees me thro. So that answer seems to make them realise how thick they are for not understanding but makes them feel ok becoz you say you are coping. Bad cop/Good cop approach. It might sound harsh but done in a possitve way it works especially when we are feeling a bit low.

  • LOL I don't explain any more - most people don't explain themselves to me so why should I bother? And the next person who tells me I look 'well' might just get a stick up their arse! (sorry...)

  • Sorry you feel so bad,I often think, if you were in my shoes for one day,you would be screaming,but we are so used to constant pain,and pretty good at hiding it,that people don't understand, they witter on about bruised toes or sore backs,and don't get me wrong, I would never wish this spiteful disease on anyone,but they just don't get it.i try to be positive most of the time,but there are days I just want to give up,I then find my stash of Cadbury flakes,watch all my corrie episodes and do sod all,makes me feel a bit better.hold on in there.xxxxx

  • Well I survived work today, now for feet up, tea and biscuits :)

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