I want to be understood!

I'm sure you've all struggled to get people to understand your fibro? Any advice for me? I'm 21, have suffered with fibromyalgia since I was 12, got diagnosed at 18 and I'm fed up with people saying those dreaded "but you look okay.." words.

I'm struggling to get people even close to me to understand that I'm not able to do everything at once. I can't be on top of my housework whilst looking after my two little girls and trying to keep awake.

I don't know how I was managing before, I really don't. I've just been pushed over the edge by people calling me an attention seeker / lazy / always having health visitors and heck, family members making comments because my house isn't glistening and spotless. (Not sure how many parent's houses are like that anyway, minus the fibro to tackle too..)

What's the worst comments that you've had from insensitive people that just don't get how much we put up with?

13 Replies

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  • i think the worst thing anyone has said is pull yourself together when i was feeling suicidal ,, that person didnt know me and had no rights to comment ,,

    i have had this a long time and i remember very well the struggle when my kids were small ....the best i can say is do what you can ,, if you push too hard it will leave you worse

    when i have my grandsons they know i have to have quiet time where we sit and watch a movie or read ,, maybe if you had that time when you feel at your most tired it may be worth you trying tht

    the worst people for opinions are the ones who do not have this ,, i have had to cut out so many people from my life for this

    i hope you have a better day hun xxx if you need a chat just message me okay x

  • Thank you for the quick reply! Oh, I completely understand that. The number of people I've had to just stop contact with... it's ridiculous but then again, I couldn't have meant much to them if they were to destroy me with comments like what they made. I'd like to say I'm better off now.

    That's a good idea -- but I think my girl's are too young to understand that sort of thing at the moment, the eldest being 16 months and youngest, 4 months. We have just had to move back with my family (my husband as well) so hopefully once everything has settled, I can get a couple of hours baby sitting duty from someone and that should help a great deal.

    I'm hoping for a good day, I need to register at a GP surgery but it's quite a way away and I feel that if I do it today, I won't be any good to anyone for a few days. Still, I need to discuss some medication options or get some referrals - anything! (Hopefully.. depending on what these doctors are like, I've had a hard time trying to find a decent one)

    Hoping you have a "good" day. I'll keep in mind - same goes to you, I'm always happy to listen xx

  • Hi, I know its hard and maybe this will sound easy to say, but i say it because i find its the best way to deal with it; 'they are the ones with the problem'. You have been diagnosed with a real illness and if they don't believe or understand you, then they are not worth worrying about.

    I have both family and friends who I know (not think) do not get it - that's fine. If you've tried to explain or given them literature to read about it and they still have a problem, well let them have the problem and stop feeling bad or angry about it. It's wasted energy and will push your stress levels up.

    I hope this helps. Whenever I felt this way, I learnt to say 'Let it go' and then focused on something happy, rewarding, relaxing, anything that was positive.

    Focus on your needs and those of your children. Nothing else matters.

    Love and hugs, Kimbell

  • its funny this is the time you know who real friends are .. i dontknow how i managed to work full time with four kids now ,,i had to give up my job as a cleaning manager so now i have gone from over grand a month to four hundred ,,

    with the kids its worth trying to have downtime now ,, my lot kids and grandkids always loved a story followed by a video ,, ( shows my age that lol ) they used to look forward to cuddle or making time ,, we always had a huge box of paper paints ,, shiny things all kinds ,, my edest girl has same for jason as he loves it to .....

    im sure there is a way to find out about gp but cant sodding remember it at mo ,, when you go in take a list of every symptom as i know i alwats forget xx

    sorry for typos hands sore today

    have a good day hunny x

  • fmauk.org/information-packs...

    fmcfsme.com/

    butyoudontlooksick.com/navi...

    fibromyalgiatreatment.com/l...

    I have provided links to three very useful sites.

    The first FMA UK has resources to break down into understandable chunks

    the second is a site my a sufferer Misty Roberts who has dedicated her life to Fibro awareness and helping fellow fibro-ers understand their condition

    the third the Spoon theory is great for demonstrating life with any chronic condition to normals... it was written for Lupus but has been adopted by fibro-ers too

    and the fourth is a resource you can give to people that just wont understand.

    Good luck hun,

    no disrespect to anyone else, however, when you have a diagnosis of fibro at a young age it is very difficult getting people to understand why the "slip of a kid" is struggling, I am 27 and have had this problem since 14/15. I even had a high school teacher tell me I had no idea what it was to be stressed as I was constantly anxious about the fact i was in agony all the time and fell asleep in her french class. I didn't have a diagnosis at that stage but I remember to this day how hurt I was at her lack of understanding/

  • Thank you all for the comments. :) Just wanted to say a massive thank you to you all for advice, the kind comments and of course, some helpful links which I will take some time out to read a little later on.

  • Oh, the memories of the school attendance officer turning up at my house every morning at 7am on the dot to make sure I was to attend school and not "laze around in bed all day". I wish I had been diagnosed sooner but of course, most of us know how hard it can be just to get to that milestone!

  • I only wish people who make sweeping comment's while addressing a fibro sufferer would live that persons life for just one week. Knowing what it's like to be tired does not come close to the complete exhaustion of fibro, having a painful neck or twinge of the back is nothing to the constent acute pain we live with day in and day out. And looking well on the outside does nothing to disguise the depression and loneliness we feel on the inside.

  • I feel for you, I've lost all of my thirties and half of my forties, still have yet to come to terms with the loss of vitality but I would be happy to give you some if I could, to have had this from such a young age, I hope you've got the worst out of the way and things get better, looking after a child is difficult, my daughter is 10 yrs old and we have just had her registered with young careres, she has found 2 other friends with mum's with FM. I still feel a lot of guilt for what I cant do I'd like too.

    The hardest thing for me is I am surrounded by negative people who think they have all the answers and I am now taking charge of my life by been less involved with them and including more positive understanding people (this website been one) into my life, its difficult because I'm a "nice!" person and never been one to judge others but I feel more in charge and I do mourn the loss of those friends but with FM you have to change your lifestyle and put yourself first.

    Be strong, feel for those who are blinkered and next time there in bed with the flu say "now you have an idea how I feel" :-)

    I hope things improve and you get the life back you deserve.

    xx

  • bless you yournoyt alone we all understand on here we are all here for you love diddle x

  • Hi its not just what people say its the look 2 as if its like for gods sake just like I say my husband take my fibro for 1 day then we see x

  • Thank you all for comments; they've made me feel just that little bit better, I know that I'm not the only one struggling to get along daily and trying to make others understand.

    Oh, yes Kaz. That's what I've been saying to my husband, he's only just researched the condition and now feels awful because he didn't realise just how bad things were for me. What I'd do just to be "normal" for one day.. then again, what's normal?!

  • Hi, I completely know how you feel. Though I don't have children i am currently trying to study towards a degree in chemistry. I like to think though that we are maybe luckier than some people on this site, as we don't really remember what life was like without this pain, I remember being more active and happy but i don't remember being without pain as I was so young (11) when it started. I wish I could get my friends to understand how I feel and my boyfriend to spend one day in my life and realise im not lazy...

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