Old 09-28-2017, 01:40 PM #1 (permalink)
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Thumbs down I can't believe many videos making fun of fibrosufferers are still online

I understand the freedom of speech but wow!! I hated it when I clicked it by accident and ended up with some thing that literally left me specchless. At lease for for a few hours. which is one of the reason why I've never personally post any video on YouTube ever. Don't get me wrong I love YouTube and all their tons of great info videos and fun stuff, but sometime it can hurt me phisically and mentally when some ignorance human decided that it's a place to post video picking on people who are struggling trying to surviving each day. Like the time when they first announced fibromyalgia awareness day, omg. How can it be this many fibro sufferer haters out there still? Are we that annoying? I'm trying my best not to play the victim, but how far do I have to be a statues about this? I don't even mind people teasing but some of those video are right down hating fibro suffer guts. What have we ever do to them I wonder.

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Old 09-28-2017, 06:44 PM #2 (permalink)
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Default Re: I can't believe many videos making fun of fibrosufferers are still online

They just dont understand...its one reason i dont even like discussing whats wrong with me even to aunties and cousins i dont see often as i think they might have similar point of view to some of the general public like you are refering to that i am guesslng are saying we make it all up or similar..like we are weak people with a few aches who dont cope.

LOL is that about right?

I hate the stigma that exists ..it actually knocks my confidence because my own family dont understand and make demands on me i cant meet and i end up feeling pathetic and like im trying to justify myself..or now say little at all but it has caused all sorts of family issues for me then the stress of that makes me worse...lol but they dont understand the link between stress and fibro getting worse either so it sounds like more being pathetic to them.

I wish they would rename this illness to something with more oomph or credibility. NO one treats people with Parkinsons or MS like its imaginary.

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Old 09-29-2017, 11:56 AM #3 (permalink)
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Default Re: I can't believe many videos making fun of fibrosufferers are still online

Omg you are so right ! They should rename it cause it was also a wrong name to begin with. I wonder what name should it goes by. Like when my Non-24 was called freerunner sleep disorder or entrained sleep/wake disorder. It was so confusing to even find what it was, and still was looked down upon or disbelieved the same way fibro is till the drug company renamed it non24. I'm just so sick of hearing saying that fibromyalgia is a man made up illness, and that we're just a bunch of lazy bums that popping pills and sleep and eat all day while doing nothing but complaining, too lazy to show up at work , this kind of saying still floating around. It's 2017 and reguardless of how many info came out about fibro being real it can't seem to wash away any of that false accusationing stains . The worse probably are the people who're so strongly believing that idea so much so they get misleading jealousy, and it came out as some kind of an activist hatters against fibro sufferer like a plague. Or sadly trying to conning their way in to one which making it harder for the real sufferer to gain any credibility . It's absolutly ludicrous! I can't even imagine how could this ever going to be fix. Sure we have famous people out there with Fibro, but what if the fear of being view that same way made them scare away from pushing any awareness further?

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Old 09-29-2017, 01:01 PM #4 (permalink)
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Default Re: I can't believe many videos making fun of fibrosufferers are still online

My ex works at a very high rank in the medical profession and he doesn't believe in this disease or chronic fatigue syndrome or ME. So if people like him dont believe we are genuinely unwell im not sure when or if the stigma will ever be gone.

In other peoples defence its a hard disease to understand even for us but we can feel it so know its real.

My family have said all the following in the past ..it cant be that bad or the worst thing i can do is rest... or worse versions of that...like have a bath and you will be ok or once you get started doing more it will get better....lol or its your lifesyle..you dont do enough

Hence i no longer confide in them.

It can be a very lonely disease when it feels like those closest to you are judging you in a negative way when in reality we are brave warriors every day.

I dont think i could watch the utube videos and comments now as my resillience to us all being unjustly belittled is pretty low

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Old 09-29-2017, 03:33 PM #5 (permalink)
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Default Re: I can't believe many videos making fun of fibrosufferers are still online

I usually don't watch or listening to stuff that are clearly demonizing anything good nor bad, simply because I have a fear of getting depression which usually not easy to detect or shaking off. But mistakingly watching some is unavoidable for me especially during brain fog. It's heart breaking to hear any doctor still denying the existence of fibro pains when it's clearly that even more doctors out there now having fibro them self are clearly out spoking about it. Some doctor even came out saying that it's the decease that A type people would gets. Although I've know for sure that I've tested 70% B type before , if that is the case for sure , then 30% A type of mine must have been an absolutely&possitively dictator . I usually describing my polictically point of view to other as neither republic nor democratic but rather a consistency autocratic maybe that's why lol. YouTube is crazy.

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Old 09-29-2017, 04:37 PM #6 (permalink)
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Default Re: I can't believe many videos making fun of fibrosufferers are still online

lol i think i am A type but you make me chuckle thinking your 30% A type is a dictator!

Your sense of humour shines through in almost all your posts and is very much appreciated here!!

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Old 09-30-2017, 05:01 PM #7 (permalink)
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Default Re: I can't believe many videos making fun of fibrosufferers are still online

You're always overly flattering me to the point where I felt a bit awkward, but thank god my 30% don't seem to effected. I often wonder about A type and B type differences in panic/anxiety and coping stress problems. Cause from what I know so far I shouldn't even have panic attack if my B types is that strong to begin with. I took many tests in my day done by therapists and psychiatrist when I was younger the results were always the same to the point where my parents chose to sent me to art school instead of letting me stayed the way I was. I often wonder in what kind of conversation did they have to have made such drastic adjustment. They never say.

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Old 10-05-2017, 02:36 PM #8 (permalink)
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Default Re: I can't believe many videos making fun of fibrosufferers are still online

Quote:
Originally Posted by diamond View Post

I wish they would rename this illness to something with more oomph or credibility. NO one treats people with Parkinsons or MS like its imaginary.
I totally agree! In some European countries, I read that it is also referred to 'soft tissue rheumatic disorder' - which honestly sounds so much better than fibro.

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Old 10-05-2017, 02:40 PM #9 (permalink)
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Default Re: I can't believe many videos making fun of fibrosufferers are still online

It actually makes me double depressed when any kind of person (doctor/man on the street/academic/waitress etc.) does not believe something like fibro or CFS to exist - this actually means that they have never ever felt the pain we feel. Or the fatigue. The constant, depressing, life-stopping, dream-crashing fatigue and pain. Just imaging how easy their life is - though I know life is difficult for everyone - but come on, you don't wake up feeling exhausted, you don't hurt 24/7?.....

I want to yell at them; Damnit, you are so freaking lucky, stop attacking us and focus on what you have, appreciate how lucky and blessed you are, and use that energy in doing something positive in life'

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Old 10-05-2017, 03:10 PM #10 (permalink)
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Default Re: I can't believe many videos making fun of fibrosufferers are still online

Just watched a video, I liked the attitude in it, it made me feel good. It takes fibro seriously...but at the end it kinda goes 'well, let's do something positive now'.

Just search for 'A Real Doctor Watches Lady Gaga's 5 Foot 2'

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Old 10-05-2017, 09:56 PM #11 (permalink)
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Default Re: I can't believe many videos making fun of fibrosufferers are still online

Wow I just watch it too. Hes funny guy especially during the Gaga topless comments . Lol

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