How can I make them understand?

I was diagnosed with RA about a year ago and am currently on sulfasalazine and hydroxy but still feel in pain so am going to start on a low dose of methotrexate which I hope will help.

My natural reaction to this type of thing is to put on a brave face and get on with it, I was diagnosed with MS a few years ago and now I don't know which of these diseases is causing my current issues and I don't know how to explain to people that I spend most days telling them everything is ok but actually things are quite tough.

I don't specifically know what I want or need people to do so I don't mention it. I live alone, with family close at hand, but when I see friends I tend to pretend there is nothing different and I'm the same as I've always been. I feel that I'm missing out as I can't do what my friends do, just getting through a week is a triumph for me. How can I make others appreciate that as much as I want to do the things they do, I just can't, but I am still the same me??

Sorry to moan and whinge but this place has helped me in the past so thought this might be the best place to start.

Thank you

Phil xx

14 Replies

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  • Hi Phil- congratulations on all your hard work. Your situation is complicated. Coping with all this and keeping your life moving forward, enjoying things and friends is a big challenge. It is hard to know what to share with friends with the invisible diseases. My strategy for continuing to do things with friends is finding a way to participate in part of the activities, meet part way through or at the end and do what I feel good about doing.

    all the best, Doreen

  • Doreen, that is such great advice, thank you for your words, need to start looking after me for a change and stop worrying what everyone else thinks about it, because the people who care about me might understand xx

  • Phil, you aren't whinging!! I think that is one of the most damaging ideas we carry, that it's our job to be brave and cheerful regardless. :P I tend to have the cheerful-me armour too, so I understand. Everyone is just waiting for me to be better, me included. I think perhaps the best thing to do is pick one person you really trust with the truth, and tell that person. Tell them you're afraid to whinge, but tell them what this disease is actually doing to you. Invisible illnesses are so hard to share (if I hear 'but you don't LOOK blind' one more time there may be violence.) You don't need to tell everyone if that makes you uncomfortable, but I've found having at least 2 people who really understand make a world of difference. The other thing I've done is learn about the disease so I have facts to present as well as my subjective experience. There's something comforting about facts - they give me permission to be as I am.

    Some people won't get it, but people who care about you will try. xxx

    Bats

  • Thank you for your wise words, just got to be brave and open with someone I can trust, that is such a difficult thing to face but it will help me in the end I guess 😕 xx

  • I've had an idea! That doesn't happen very often, so I hope you feel honoured lol!

    How about, instead of telling people when you feel bad, telling them when you feel good? E.g. "it's great having a laugh like this, it makes me forget the pain and so on." If you have a really good day you can tell people how good you feel, or, if something works well (hopefully mtx) you can share that it is helping with the RA side of things.

    It all hinges on them gradually extrapolating from the 'good days' the 'pain free times' the fact that you might have 'more energy than usual' that clearly there are other, much more difficult times. The ball is then in their court to ask about the difficulties you face.

    Actually I think I've been employing this strategy for a while without realising it. I wouldn't say it works brilliantly, but at least it is an outlet and a way of gradually introducing a bit more reality into relationships.

  • Thanks postle2 that's a really interesting way of looking at it.

    Think I might give that a try and I do feel very honoured at you sharing your amazing idea 😀 xx

  • Try "the spoon theory" as a way of explaining why you sometimes can't do things that you can do other days. bbc.co.uk/news/blogs-ouch-2...

  • Thanks Earthwitch, never heard of this before, I will have a read up on it

  • Hi Phill76 and Earthwitch. A few weeks back I asked the very same question and I had The Spoon Theory suggested to me. I printed it off and gave a copy to my closest relatives. They almost get it, but best of all, I get it. Hope it helps you too, Phil. Take care Babs x

  • A neighbour told me recently that given the restrictions on my life I was always smiling. It made me feel stupid, smiling when life is awful. But I do feel better from talking to people who can distract me. However I have my husband who understands most of the time and struggles to understand when he doesn't.

  • Thank you Cathie, when people say I'm amazing it makes me smile but don't always believe them!! xx

  • Sometimes just a moment of relief can lift your spirits

  • I found that recording my pain on little stick figure meant that I could off-load the problem onto the piece of paper. It gave me a record that I could show to health professionals without having to dwell on it - so I could use distraction to avoid the pain.

  • Thank you, that's a great idea, something else to give a try.

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