Fed up with ignorance & lack of fibro knowledge! Ggrrrrr

Yesterday I went out for a meal with my husband. First time I've been out of my home since my daughter got married 7 weeks ago.

I saw an old friend I hadn't seen for a while. He asked how come I never went out any more...I told him because of my fibro and other problems. His reply was "oh...my mother in law has that, but she makes an effort to get out and and go to work"!

I was dumbfounded. Yes, im sure she has it, horrible however ill she is, but so many don't realize that there are different strengths. I worked with it for years until I got so bad I closed my business down, stopped my hobbies, singing in a band, sculpting, painting, cake decorating...list goes on.

Not because I gave in but because it became physically impossible. Especially when 2 years ago my fibro bought me m.s symptoms.

I get that we can have it not as bad as others but some people think we are just lazy and not as bad as we are. Did this guy think I enjoy being so isolated and bored out of my brain, suffering with severe headaches, hives, trigeminal neuralgia, fainting, falling, constant pain and weakness, exploding bottom and pain from IBS. Not being able to wee...shaking, muscle spasms, feelings of electric shocks through my body on a daily basis.

Sorry fellow fibro's...I've had to moan. It gets so frustrating. Ggrrrrr x feeling

40 Replies

oldestnewest
  • I know how you feel. Try not to let other people's ignorance spoil your evening.

    I never like to call anyone a liar but sometimes people make you wonder.

    Your friend might have been trying to make you feel better that one day you might be able to do more.

    Gentle hugs.

  • I guess I was just feeling vulnerable. Its so nerve wracking going out for the first time. Guess I was being over sensitive.

    As for liars lol, my neighbor claims to have fibro, although she claims benefits and works 3 jobs cash in hand, I was looking on a fibro page on fb the other night and she was replying to a questions about DLA. She put on there that she was so ill that she has applied for it and has aids fitted all round her home because she can no longer manage. Just saw her return from her first join of the day, riding her bike home. Disgusting! It gives genuine sufferers a bad name!

    Thanks for taking time out to reply :) x

  • Yes had a friend who said she had fibro and then saw her play tennis, not on DLA but did have a blue parking badge.

  • Its sooooo annoying!

  • Hmm, but he could still have been more tactful. Ignorance is not bliss by a long way. Most of us know this from bitter experience.

  • Very true!

  • Im so sorry that your 1st outing was shot down by such an awful comment, Lol why do people think that 1 fibro fits us all.. I've had the same thing said to me and its so hurtful and frustrating when like you i had a full life with lots friends and must admit was always up for a party, new life is hard to cope with and the people i thought were friends seemed stopped calling as i cant go out..

    All i can say is if they had our bodies for a week they might think before they speak..

    Well done for going out and who knows you might go out again soon, little steps is all we can do..

    Gentle hugs to you.. viv xxx

  • Yes thankyou, I'm gonna try again soon. This weather doesn't help, seems to zap the strength from us. I always say that about folk, they should live with for just a day or two, they would soon know how if feels.

    I too have lost lots of friends, in fact nearly all but one. I'm lucky to have my hubby and daughter. They are both so understanding.

    TT hanks for the reply viv...hope ur coping :) xx

  • Im so sorry that your 1st outing was shot down by such an awful comment, Lol why do people think that 1 fibro fits us all.. I've had the same thing said to me and its so hurtful and frustrating when like you i had a full life with lots friends and must admit was always up for a party, new life is hard to cope with and the people i thought were friends seemed stopped calling as i cant go out..

    All i can say is if they had our bodies for a week they might think before they speak..

    Well done for going out and who knows you might go out again soon, little steps is all we can do..

    Gentle hugs to you.. viv xxx

  • Im so sorry that your 1st outing was shot down by such an awful comment, Lol why do people think that 1 fibro fits us all.. I've had the same thing said to me and its so hurtful and frustrating when like you i had a full life with lots friends and must admit was always up for a party, new life is hard to cope with and the people i thought were friends seemed stopped calling as i cant go out..

    All i can say is if they had our bodies for a week they might think before they speak..

    Well done for going out and who knows you might go out again soon, little steps is all we can do..

    Gentle hugs to you.. viv xxx

  • I do not blame you for having a rant!! We all need to explode sometimes.

  • Miss boo how awful ,

    I'm not surprised similar things have happened to me .

    I would nt wish fibro let alone our other symptoms on my worst enemy but sometimes you do want them to walk in our shoes ( or Lay on our sofa/bed) for just an hour so they know how we are feeling . Also why is it so hard for people to understand we are all unique and therefore so are our illnesses!!

    I think with all your symptoms your very brave and must have really pushed yourself to get out and suffered all the consequences the following day . Well done you don't let them occupy any space in your mind and now you've also made me feel better now I've had my rant so thank you

    all the best squeak xx

  • Lol that made me chuckle! I was brave lol the last time I went out I refused to use my crutches (was showing off being mother of the bride) didn't want them in my photos. Then fell flat on my face outside the registry office...so that back fired on me. Had a scabby knee and ankle on my photos

  • Ah bless you I can't help but think how you picked yourself up and smiled for photos as blood poured from your knee !!!! Well I have bought a walking stick and it took me a good 4 months to listen to advice. The foldable stick is hiding in the ironing pile at the mo. I know I need it but well I think we understand each other !! I may get it out this week or I will end up with scabby knees lol squeak xx

    Ps if I name my stick maybe I will feel more attached to it ?? Lol xx

  • Hi piggysqueak,

    I named my walking sticks. I decided if I had to use them, and lean on them, I would use a name of men I liked. So my favourite stick is called Denzel after Denzel Washington, because I think he is gorgeous, another one I call Sydney , after Sidney Poitier. My mobility scooters ( I have two) one big comfy one, called Harry after Harry Secombe, because he used to be quite large and very funny,and the small one that I can put in the boot of my car, with a hoist is called Tom, because I liked Tom Cruise!

    I just decided to try and make it easier to use them, as I was soooo reluctant to use a stick, I used to leave it all over the place, as I would walk a bit without it, then use my stick, then put it down somewhere, be pig headed and try to walk without it!! It's been a struggle, but now I am so bad I couldn't leave it anywhere, I need it all the time. The funny thing is, my five year old grandson, says ' I'll get Denzel for you'. When we were having work done on the house, even the builder. Would say, see you have Denzel with you!!!

    Just thought I would tell you about my named walking sticks etc. good luck with your name choices and hope it makes it easier for you to use it. Gentle hugs x

  • Haha that's brilliant. Hang on, I'm just getting tom, he's locked in the boot! Xx

  • Hi lizzyear Absolutely fantastic brilliant names lol . How do I choose brad Pitt or maybe Roy cropper honestly !!! I'm laughing so much at Harry Secombe . I will let u know what I decide it's definately getting a name when I get it out of the ironing basket love squeak xxx

  • Lol...rick????

    I hate using anything, I'm just to proud. I'd rather stop in and be a hermit! X

  • Miss boo I hope u don't mind mme asking but did u decide a crutch was better than a stick or were you assessed. I'm wondering if I need a physio assessment to see what I need rather than trial and error ! Thanks squeak ps I have nt laughed so much in ages I will never picture Harry Secombe the same again ! Are you naming the crutch ? Xxx

  • I have a pair of the arm rest crutches and a stick. I can't use my stick because I get parathesis in my hands/arms. I get it with the crutches but I feel they were a bit safer somehow. They help my back too, more support, got a few things wrong with it, Sherman's disease, sciatica, arthritis and damage from a car crash (I m falling apart) lol.

    I need to think about the name thing, I was gonna have jedward for my crutches but I don't fancy being stuck in the middle of jedward lol xx

  • Ah bless you I can't help but think how you picked yourself up and smiled for photos as blood poured from your knee !!!! Well I have bought a walking stick and it took me a good 4 months to listen to advice. The foldable stick is hiding in the ironing pile at the mo. I know I need it but well I think we understand each other !! I may get it out this week or I will end up with scabby knees lol squeak xx

    Ps if I name my stick maybe I will feel more attached to it ?? Lol xx

  • so sorry that you had that said to you, its true people should spend a day in our shoes! I also have lupus and both together give me grief so I too get annoyed when people say "you look so well" so now (depending on who said it) say "the wallpaper hides the mould!" lol.

    chin up poppet, you did your daughter proud. hugs x

  • Lol not heard that one. I heard a funny saying the other day, somebody showed me a photo (not a nice person in the picci) she was at a wedding wearing crocs...in all fairness I live in crocs but as wedding! Apart from that she had thick navy socks on and a white dress, I looked and said to my friend "good lord" she replied "well, what do you expect, you can't exactly polish a turd" lol cracked me up! Xx

  • I can relate to worrying about the photos and making things worse. do you know someone who can Photoshop the images? You said you fell on your face, how was that, not mentioned so hoping that was OK.

  • I didn't break any skin but I had a lump on my chin! And bent my thumb backwards. It was so embarrassing. Scuffed my new shoes as swell!! Lol

    I laugh now but it really shook me up. I couldn't relax. Fortunately it was before the service so I cried my heart out for falling and my baby getting married. Nobody was any wiser (well, except my mum)

  • If I don't care about losing the friend I say "I don't look ill? you don't look stupid".

    I'm in much the same state as someone else yet cant get a bus pass on disability grounds - BUT I DONT MIND as it tells me I'm better (morally at least)

  • Lol I will remember that one!

    That's as good attitude to have

  • Hehehe. And I'll let you Grrrr too. That's normally reserved for badgers :P :D

  • Haha brilliant!

  • Hi miss_boo

    I am so sorry to read that, and I know how frustrating and annoying this sort of remark can be! it really helps to take a deep breath and walk away!

    Take care

    Ken x

  • I agree................GRRRRRRRRRRRRRRRRRRRRRRRRrr!

  • Hi there i understand "they just dont get it" people, mainly friends say to me oh just do everything anyway cause you are going to be unwell regardless and oh just eat everything going it wont make any difference!if they only knew. It makes you feel like not giving a reply to their questions to protect yourself from their replies. wishing you well.

  • I have had the same thing happen to me recently! Two women babbling on about their Mother having fibro and how much she does at her age (70) Doses of steroids when she's bad etc etc. Turns out she has polymyalgia!! That just affects her arms and shoulder! Well done with getting out and about! "Don't let the bu**ers get you down" (as my Grandad used to say)!!....much love....ninja...xxx

  • It really gets to u though doesn't it. They have no idea what we are going through xx

  • Amen sister. I hear you loud and clear. People think because we don't have crutches or aren't bleeding, etc... that we aren't really suffering. I been through it so many times. It's horrible and their comments are very rude and hurtful. Hope you are feeling as good as you can otherwise sweetheart!!! Hang in there, xxx Mitzi

  • Thank you

  • I totally understand, I was diagnosed 24 years ago and 5/6 years ago I couldn't sit because of pain ,walkin is a joke cause my balance it terrible I get muscle spams,ibs,migraines which last for days rls lots of other thing to but I've had a bad day and brain freeze has kicked in, I went to my daughters wedding and the new sister inlaw asked my what was wrong and she said ain't that the yuppy flu, I was polite even though I was angry come round and u just use my elbow crutches and I will use my scooter that just cost me a small fortune by the way, I'm still waiting for her visit ,the last migraine I had I had it 5 days I could not see , in so much pain I just kept passing out, people have no idea how bad this illness is. Hugs to all hope u have some sleep and it's painless take care Tracypom

  • Oh gosh

  • You should have got your husband to bang him in the goolies, accidentally on purpose of course, and then say that is the pain my wife experiences most of the time day and night but she makes a supreme effort to do what she can. Now you go and run around like your mother in law whilst you are doubled up in pain where I 'accidentally' you in the goolies! Blooming cheek of the person! But I've had that but hit no one in the goolies as yet! LOL! I've given them an earful though, verbally that is! People see us, usually, on better days and think we are ok or making a big deal of a a few aches and pains little do they know how ill it can make one and how it ruins peoples' lives. Believe me it is horrible illness as I'm a fellow sufferer along with Migraines, constant tinnitus, Osteoporosis and bad vision etc etc (to long a list to bore you with). (Optician told me my vision is effected by Fibro) But I have better days sometimes and can do more but usually suffer for it the next. It is an individual thing and no one has the right to compare you to anyone else. So next time remember if you see that friend and your husband is with you get him to kick him in the goolies (accidentally of course - don't want be had up for GBH)) and tell that person to run around when he is double in pain and eyes watering! (Mind you, you could knee him in the goolies if you have the strength!) Don't be bothered with people like that. I use to be a mental health counsellor and stress management therapist and know how fibro and related symptoms can effect individuals. So, my thoughts go out to you love as people can make one feel rotten or guilty by crass remarks but let them get on with it. As I use to tell my patients. 'They have the problem, not you.' Don't be shy in telling idiots like this 'You have no idea of what you are talking about and just thank God you don't suffer from this terrible affliction.' Suggest he logs onto this website or go and do some medical research on the matter. Oooh they do make me mad but as an ex professional I'm suppose to keep a professional stance on this but I'm retired now so can drop the 'professionalism' and say rollocks to those idiots that talk out of their rear ends. Lots of gentle hugs to you love and don't let the B's grind you down. Sorry about any misspells or grammatical errors as my eyes aren't so good today. (Incidentally I had to give up the work that I loved helping others with their health issues due to Fibro and misdiagnosed Coeliac disease that nearly killed me due to malnutrition and migraines that kept me in bed 6 days at a time every month vomiting but couldn't keep anything down. Due to some idiot quack that said it was all in the mind. I just thank God I'm still here!) Thankfully I changed to a real doctor in the end that had me diagnosed and treated within weeks. She knew me better and knew my problems were 'real' and not in the mind. But it ruined my working life and the job I loved the most. Thankfully I have a faith that keeps me going and learnt to laugh at myself and ignore the pratts that think they know better of our illnesses than they do. You carry on going out when you can and try to enjoy what little pleasure you are able to divulge in and don't let others put you down or compare you to their Mother in laws, aunts uncles or whomever. You are an individual and fibro can effect people in many ways. Wish I could meet that bloke that said about his mother in law and I'd put him straight for you!

  • Lol...that made me crack up! I was too dumb founded, I sat there like somebody had shoved a sock in my mouth. I wouldn't mind but I've got a benign tumor on my thyroid and 18 of them on my spine, plus Sherman's disease, so I do go through the mill. My hubby said I polish up to well lol. Think he thought he was a promise...gulp! But hey ho. It is hard for us all. No matter what degree of it we suffer. But yeah I'm definitely gonna toughen up. Turd! Glad I didn't tell the bloke that every time he breathed out a dry bogey popped out of his nose and the went back in lol xxx

You may also like...