PEOPLE NOT UNDERSTANDING

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PEOPLE NOT UNDERSTANDING

Postby Lulubobs66 » Tue Sep 17, 2013 10:49 am

HI I was wondering if anyone had any advice on how to get people to understand, even people close to me in my family don't really understand, especially my Mother-in-Law. Yesterday when we were talking on the phone, I said I had a fibro flare up (having just got over the flu) and she said 'Why', this in itself depressed me because I really shouldn't have to explain why? I did though as best as I could and said it's probably because I've had the flu virus and I said anything can set it off, stress, change in weather etc and viruses might be one reason for getting it in the first place. She just said 'oh'. Other people not understanding I can just about handle but family I can't and it is really getting me down. Has anyone any advice on what to say or do to get at least the people who are close in my life to understand for once?

Thanks in advance for your reply

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Re: PEOPLE NOT UNDERSTANDING

Postby jools1903 » Tue Sep 17, 2013 11:00 am

Short of giving them a print out of the causes and symptoms for Fibro, then I have no idea either :(

I had a similar reaction last Sunday from my stepmum - I have just had two weeks off work due to fibro and GP has signed me off for another week to try and get my sleeping under control before I return to work, I work full time and she was concerned that, not sleeping for more than 3 hours and going to work would mean that in a few weeks I would be off again. However, my stepmum screwed her face up as if to say that I was faking it all!! I was so angry and upset :evil:

Anyone with any other ideas?
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Re: PEOPLE NOT UNDERSTANDING

Postby Garyl » Tue Sep 17, 2013 11:02 am

Not so good that, i know we expect family to care and understand but it is hard, i am truly suffering flare ups nearly daily , my mum i am lucky understands as she saw same specialist i saw who diagnosed fibromyalgia for me, she has bad arthritis. She asked him what fibromyalgia was and he explained to her and she said she asked as her son suffered it so he had diagnosed and she said he was clearly upset as there was nothing he could do to help her arthritis or my fibro.

You just have to try and make them understand. Is difficult but they will come to realise eventually
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Re: PEOPLE NOT UNDERSTANDING

Postby clubsound4 » Tue Sep 17, 2013 11:05 am

hi it can be very hard sometimes trying to explain and make people understand it very frustrating :yikes:
I said to my partner about fibro fog and seeing an object,knowing what it is but cant get the words out until something really strange
happened the other day,,he had the same thing happen to him over a pillow case of all things,he knew what it was but struggled to get the words out, later on we were sat outside and he apologised to me :-D result :-D he actually thought I was putting it on a bit but know recognises exactly how hard it is, soft hugs :lol:
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Re: PEOPLE NOT UNDERSTANDING

Postby Happy(jerky)feet » Tue Sep 17, 2013 12:26 pm

Hi everyone ,I so understand what you mean . I am very down atm ,although my husband and children understand ,no one else seems to. My so called friends have deserted me bar one and mother and other family members don't get it at all . I have to pull myself together ,get over it , it can't be that bad they say . I know they think I am lazy , I don't want to feel like I do ,none of us do ,we would all like to be able to live pain free and as fresh as a daisy! Wouldn't we :-D I have tried to explain the symptoms of fm ,shown them web sites etc . I have just come to the conclusion ( literally while writing this) I am not going to worry about it anymore ,let them think what they like , I am not going to make it make me feel any worse than I do . Oh I do feel better for writing this ,it has got it of my chest . We fm sufferers have enough to contend with without these negative comments so :nono: more lots of love and gentle hugs to all of you xx
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Re: PEOPLE NOT UNDERSTANDING

Postby migrembe » Tue Sep 17, 2013 12:56 pm

I think the hardest thing for me is 'just because i did it yesterday, doesn't mean i can do it today'

I have thought about having retractable thorns implanted all over my body, bit like a cactus, the higher the pain the bigger the thorns and therefore anyone getting too close will know just how it feels.
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Re: PEOPLE NOT UNDERSTANDING

Postby welshwolverine1969 » Tue Sep 17, 2013 1:26 pm

I can relate to this i have the same problem with the inlaws omg its like trying to educate pork lol so i give up now i still get the digs n hints about not working and so on but after three years now i dont let it get to me anymore its like water off a ducks back we got enough to worry about coping each and every day let alone worrying about what other people are thinking if we lose friends then thats there loss not ours just hold you head high you know whats wrong with you and you dont need to go into details evertime they make a stupid comment believe me it just makes you question yourself and makes you feel worse so put in a nut shell stuff em if they dont understand lol xxxx
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Re: PEOPLE NOT UNDERSTANDING

Postby GinaD » Tue Sep 17, 2013 4:08 pm

I try to explain to my kids how I feel, but I dont think they really understand, not sure if thats because Im scared they think Im just lazy or if they really dont understand. Im so depressed i just want out! Work is really hard and I struggle to just get in nowadays! Hopefully we will both manage to work out how to deal with this, big but very gentle ((hug))
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Re: PEOPLE NOT UNDERSTANDING

Postby Lulubobs66 » Wed Sep 18, 2013 4:55 am

Hi everyone :-D Thank you all sooo much for your replies, it has really helped me, I really wish that none of you suffered with fibro etc but to know I am not on my own is comforting and how you all so understand where I am coming from, it's like a breath of fresh air! I am taking everyone's advice on board in particular 'stuff em' lol x. I am so sorry that your all going through this too, the negative attitude of people we just don't need do we. One day I hope they will understand. Lots of soft hugs to you all and thank you again so much for your replies x :-D
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Re: PEOPLE NOT UNDERSTANDING

Postby Jae » Wed Sep 18, 2013 9:47 am

I have trouble getting people to understand too!
A lot of people seem to be able to understand the pain but completely disregard the cognitive symptoms.
I often forget things that have just been said to me and this causes me no end of problems at work and home!
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Re: PEOPLE NOT UNDERSTANDING

Postby Lulubobs66 » Wed Sep 18, 2013 3:57 pm

Hi, it's really hard and makes you doubt yourself like someone said, when people don't believe you, you start trying to struggle along and be 'normal' instead of resting when you should etc. I'm going to take all the advice on board and let people think what they will, I only hope the people that have behaved in this way for their sake they don't come across something like this illness and have the same kind of reaction they have given out :( , wouldn't wish it on anybody, all the best everyone and take care of yourselves, soft hugs xx :-D
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Re: PEOPLE NOT UNDERSTANDING

Postby FluppyPuffy » Wed Sep 18, 2013 4:00 pm

You could try showing them One To Show The Non~Believers and/or The Spoon Theory They both explain about FM and what a day can be like for us. Or print it up and leave it to them to read it and see ow things go.

Unfortunately, there are a number of people who can't, won't and don't want to try and understand what it is that affects us. If you've come across them and your attempts to explain things are just dismissed and brushed under the carpet, you may want to think about whether they are actually worth putting your energies into when you are met with such responses. When I come across such numptys and socks, I just imagine :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: doing just that at them :tongueout: :tongueout: :tongueout: :tongueout: :tongueout:
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Re: PEOPLE NOT UNDERSTANDING

Postby Iceskatemum » Wed Sep 18, 2013 10:12 pm

Had a bit of a light bulb moment :idea: when reading this thread about why my son sometimes reacts to me the way he does..... saying I'm a liar about my symptoms and I'm just being lazy etc .

I had taken a message for him the other day and was relaying it back to him but couldn't quite remember the words or who said what, as such my speech was very jerky, had long pauses etc. While this time he was ok with things as I was trying to speak I realised that I sounded as if I was making it up on the spot and had to pause not to remember the words but to think up the next bit of "the story".

As for him thinking I am lazy given I can't manage to pace & still have difficulty with
migrembe wrote:'just because i did it yesterday, doesn't mean i can do it today'
it must be even more difficult for a third party when looking in on things .

Maybe sometimes it not just about getting others to understand us but us getting to understand how others view us .
lets hope given this insight I can be more accepting and patient about his & others difficulties in understanding with this illness
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Re: PEOPLE NOT UNDERSTANDING

Postby Lulubobs66 » Fri Sep 20, 2013 9:57 am

Thank you for the Spoon Theory link, now that made total sense to me and has also helped me to understand how to cope better with this illness myself, owe you big time there thank you! I will definitely try and give this to her because I struggle to understand it myself like the other member says if we find it difficult to understand then they must too but that's where compassion for people comes in and we should all have that and just trust in that person especially if they are family that what they are telling us is true, we really shouldn't have to explain WHY we are in pain or WHY we are so so tired. The anxiety of worrying about how I can cope with this illness is enough without the anxiety of having to explain to people, I do understand it is difficult but like I said that's where basic human compassion comes in something which is sadly lacking today
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