How do you help your family understand?

Its very difficult explainging to people how you feel when they have no idea what is going on. So how do you explain things to your family? How can you help them become more supportive without sounding like you are lazy? Its something I struggle with. I always try and see things from both sides and will never resent my family for there lack of understanding. But I need new ways to confront and ask for me support. I want to be able to spend more time with my grandchildren, see them more and have my family understand when I say I can't it really means I can't! I'm not being mean! This illness can be so evil at times. Though its the illness, not them that is the problem. I can't ever blame them.

Help and support very much needed. Thank you xxx

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  • Hello HotChocolate, thank you for your question. :)

    It can be very difficult for us to understand what's going on when we have Fibroymalgia to start with, it is a minefield for our families and loved ones to understand. The problem being they can't actually see anything. This tends to be the main problem, we still look the same, we might even behave the same. It's not really until our symptoms really hit us badly when our pain escalates, when we are too exhausted to function that they probably even notice. This is the most common problem.

    We also go through a sort of period of mourning the old "us", the things we used to be able to do and perhaps can no longer manage. This happens with our loved ones and families too, they can't process what's happened and they may feel resentful too. Speaking personally, the first year before I was diagnosed was really difficult at home, my hubby and older children didn't understand what was happening to me, I had changed beyond recognition although I still looked the same. Also even though Fibromyalgia awareness is increasing, there are still many people who have no idea what it is, the symptoms, how we struggle etc., this applies to some medical professionals too sadly.

    Have a read of the information on our main site, there is a wealth of information about Fibro there, the symptoms, the diagnosis, the treatment etc. I always think if we understand as much as we can about it, we can use this information when talking to our families and friends.

    Please click on the link for info -

    fibroaction.org/Pages/About...

    Click on all the subject titles to access more info on the left.

    Also have you shown your family The Spoon Theory, it's a wonderful article put simply and it explains exactly how we feel on a day to day basis without all the medical jargon. I showed my hubby and children this and from that point on they viewed how I was differently. I hope it helps you too -

    butyoudontlooksick.com/wpre...

    Try to explain to your family that you might need a little help with things around the house because you simply don't have the energy any more owing to your Fibro, that you are in pain and explain where using the knowledge you've acquired from learning more about Fibro yourself. Discuss The Spoon Theory, this is a good starting point.

    I hope this helps you. We will try to help you in any way we can, so please feel free to ask us anything.

    Take care. Here's a hug for you. (((hug))) xxx

    Libs

  • thankyou libertyz i to dont know how to explain this illness to family i also have spondolitis of the spine and severe walking problems when i tell my grown kids how i feel theylook like they are listnen most of the times but seem to forgetvery quickly !! and ask impossible things of me or should i say expect me to be like i used to be lots orf energy and would do anything to make others happy i.e babysitting,shopping,run to the post office which is just round the corner used to take me 10 mins but now takes me 2hours ! and causes me severe pain for days but its like they are blind to what is happning to me and my attempts at explaing the situation is just make beleive.x

  • Hi there

    I recently posted a video link for a video called what it feels like to have Fibro, it's a very powerful video and wen I watched it I was like that's me and my family and friends were like omg is that really how bad u feel. Thanks Michelle

  • Families are like the strangers in the street, through n o fault of their own. If your illness cannot be seen it is hard for them to understand. Kind of like trying to explain why even though a cloud looks solid you will fall through it. When I was first diagnosed I told my family that it was a chemical imbalance in the brain that cannot actually be treated. I told them to imagine the worst pain they ever felt and then times it by 10 at least, and this is what this imbalance does. I told them it does not mean the pain is not really there, it is the fact that it is there, very real but without a visisble physical cause. Even now I try not to tell people I have fibro, or any other illness I have, but with the fibro if they want to know that is how I explain it. Now if I have a problem my hubby will say 'is this down to the fibro'. I will try and give you an example. I was having bad pain in my ribs and I was having difficulty breathing at times. Hubby asked if the pain could be down to the fibro and I said possibly but this feels a little different. It turned out I had lung disease. Try and go down the chemical imbalance route and see if it makes any difference to the way they see it. You can only try hun xxxxx

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