What are some of the most common misconceptions you hear about your condition?

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Courtney_J

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05/07/2021 at 00:00

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Courtney_J

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Hello everyone,

How are you today? emoticon cute

Are there any things, misconceptions or false beliefs that you hear regularly about your condition? If so, how do you react to them?

Feel free to share and exchange in the comments below!

Take care,
Courtney

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fourwinds

06/07/2021 at 21:49

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fourwinds

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@Courtney_J As someone with COPD I've heard before that we've brought it upon ourselves. But what a lot of people don't realise is that you can get without having been a smoker. I know a number of people who have it from their work. I try not to react because most often it's what the person wants or is looking for. I know I don't deserve this. No one deserves to have a long-term illness.

What are some of the most common misconceptions you hear about your condition? https://www.carenity.co.uk/forum/other-discussions/good-to-know/what-are-some-of-the-common-misconceptions-you-hear-about-your-condition-4227 2021-07-06 21:49:38

robjmckinney

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Edited on 11/07/2021 at 10:36

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robjmckinney

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Just read the question again and the link so I thought I was answering a different question. So many misconceptions on my various conditions and have to a agree with others here on their experiencies. My Lymphoedema can be very painful at times post cancer treatment and its various legacy illnesses it created. Since I have various painkillers to take for other concerns unless I move to morphine again with all its related issues there is little the medical profession can do, as always!

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Bebbabe53

10/07/2021 at 13:25

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'Fibromyalgia is a figment of a person's imagination.' I, for one, wouldn't wish it on anyone. If the pain, restricted mobility, chronic tiredness, depression, poor sleep...(and I could go on), are a figment of my imagination, then I hope I wake up tomorrow with my imagination locked away!! People need to walk a day (if they have the strength) in the shoes of someone with fibromyalgia before they comment on something they know little to nothing about.

mrchipps

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10/07/2021 at 13:48

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mrchipps

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four winds, i totally agree that COPD and other diseases can be got from work environments and even the air that people breathe in every day life. for example some people in Leeds a few years ago were found to have contracted a form of cancer from the fibres floating in the air from a factory.

i worked in textile mills and many people were found to have bad lungs from breathing in the fibres from the cotton, worsted and Terrylene that we were processing, you could see the fibres in the air and it was worse , when we had to sweep up waste and blow the machines clean on Saturday morning

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lacemaker

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10/07/2021 at 20:17

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lacemaker

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People say that Lymphoedema doesn’t hurt. That is not true. Believe me it does

lesmal

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11/07/2021 at 15:16

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lesmal

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As someone with epilepsy and many other conditions, I think hearing people say that there's a cure for epilepsy must be one of the worst misconceptions for me.

One can be controlled by medication and if one is lucky enough to be offered surgery, this may or may not help the frequency of seizures. It could make one's seizure pattern worse, but still one has to rely on medication for the rest of one's life.

The stigma and discrimination that comes with the issue is another topic altogether.

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Les

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12/07/2021 at 09:27

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@lesmal i think that's the same with many conditions. i do wish people would think before they blurted out something.

mrchipps

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12/07/2021 at 12:38

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We seem to have some people who talk about serious medical conditions, without having any genuine knowledge or experience of living with them. this is very dangerous and can cause untold harm to people who are newly diagnosed with terminal diseases and are seriously seeking genuine information.

i am living with several long term illnessess, non that are terminal, but some that could kill me, if they are not correctly treated and ,medicated, that is why i will not comment on anything that i am not living with or do not have any knowledge of? my advice is if you are unsure of a medical condition or what to do about it , is simply to contact the appropriate medical specialist of doctors?

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Saladcream!

13/07/2021 at 14:19

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@Courtney_J

I find it upsetting that people think fatigue is the same as being tired. People say hinge like “I’m tired as well”. People believe you can push through fatigue, they don’t understand this will damage you. That’s really difficult with employment both bosses and staff.

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peacockd

18/06/2022 at 19:26

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@Saladcream! Hi, I went to a talk about all this - where tired is to sit down a bit with cup to tea, exhausted is needing to have a good long sleep in. Fatigue is where you can’t think straight, can’t talk fluently, can’t answer questions, can’t walk straight, can’t concentrate. You think of something you should be able to do and you can’t !

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mrchipps

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21/07/2021 at 19:58

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mrchipps

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fatigue is a long term ailment and completely different from tiredness

my daughter in law is living with ME and lives with virtually permanent fatigue and doesnt have the strength to even stand up or walk a few stets un-assissited, that is due to long term fatigue

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singing poet man

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