What not to say to those with chronic illness (and 5 ways to help)

[Demepivo]

Writer Tanya Marlow who has ME/CFS has written an article for Premier Christianity for carers and people in contact with the chronically ill with specific reference to ME/CFS.

https://www.premierchristianity.com...those-with-chronic-illness-and-5-ways-to-help

What not to say to those with chronic illness (and 5 ways to help)
By: Tanya Marlow | 1st August 2017
How can Christians best serve those with Chronic Illnesses such as ME? Tanya Marlow explains

As someone who has had a chronic illness for 21 years, I've heard my fair share of inappropriate and insensitive advice and comments, including from well-meaning Christians. The truth is, we’ve all said the wrong thing at some point to those who are suffering from invisible illnesses. Here’s five questions to avoid and five ways to help Christians with ME and other invisible illnesses:

5-10%. Most improve somewhat with rest, but sadly 25% deteriorate (according to Dr Charles Shepherd, ME Association).

Though rare, it’s possible to die from ME. Autopsies of severe patients reveal physical damage: dorsal root ganglionitis, multi-organ failure, heart disease.

Mild ME looks like working full-time, but using all spare time to sleep. Very severe ME looks like lying in a darkened room in constant, agonising pain; unable to move or speak; unable to hear whispered speech for more than a few minutes before your brain shuts down; tube-fed because you're too weak to swallow or chew. It's a colourless, silent, decades-long nightmare, often ending only in death....

 

[Demepivo]

Tanya wrote the article in response to another which appeared on the same website

https://www.premierchristianity.com...lped-me-recover-from-Chronic-Fatigue-Syndrome

How a Christian book helped me recover from Chronic Fatigue Syndrome
26th July 2017
A surprisingly large number of evangelicals suffer from Chronic Fatigue Syndrome, also known as ME. Paul S Chatfield shares his personal story of how he found healing

Chronic Fatigue Syndrome (CFS) is an illness from which an estimated 1 in 300 people suffer, a good number of whom are active evangelicals. Some recover fully. Some recover partially. Some never recover.

My own story of battling this terrible illness begins in January 2005 when I was taken ill with a virus. I was left with a tiredness I couldn’t shake off. Initially I could still cycle the five minutes to the doctor to get advice, though a couple of weeks later I needed a taxi. A few weeks later I couldn’t even manage twenty paces outside. For the next year and a half, I would go to bed at nine and sleep twelve hours, plus resting in the daytime.

During that time, people were keen to tell me what I needed to do – so I put a bowl of water on my radiator and I ate Indian mud (don’t ask...). It didn't work....

 

[Demepivo]

Please feel to comment on either article on the relevant website

 

[notmyself]

Though rare, it’s possible to die from ME. Autopsies of severe patients reveal physical damage: dorsal root ganglionitis, multi-organ failure, heart disease.

Very severe ME looks like lying in a darkened room in constant, agonising pain; unable to move or speak; unable to hear whispered speech for more than a few minutes before your brain shuts down; tube-fed because you're too weak to swallow or chew. It's a colourless, silent, decades-long nightmare, often ending only in death.

i really wish i never find this forum,but now is to late,i will never be able to delete this kind of information from my head.

 

[hellytheelephant]

Just wondering if this should be in the spiritual section(?) I wrote a reply about prayer but not sure it will be acceptable to put it on the General Discussion section..

@notmyself - try to rationalize this. It is extremely UNlikely that death results from ME....although I do appreciate how some of the posts on PR can make you feel if you are particularly struggling.

PR has so many good, kind and helpful people on it...and it would be a shame if you weren't one of them

 

[Snowdrop]

i really wish i never find this forum,but now is to late,i will never be able to delete this kind of information from my head.

It's just information. It can't touch you, it can't harm or affect you. Your illness course will be what it is whatever information you come across positive or negative. What's needed is to assess your own situation and then take steps to do whatever you can, whatever makes you feel more functional and well. By focussing on that you take your focus away from the info that frightens you.

 

[Snowdrop]

It can be a source of strength to have some spiritual grounding. However I have found that another attitude toward chronic illness that is unhelpful is the There Is a Purpose to my illness, there must be something I must learn from it. To me this sounds like we deserve to be ill--we are being punished for not being good enough. We need this illness to teach us a lesson. What I ask, about all those other people who might need the same lessons in life but swan through with near perfect health and few or none of life's severe traumas?

Not to mention it's pretty arrogant if someone in perfect health is proffering this advice. That's not to say we stop learning 'life's lessons' since we are still learning how to live like anyone else just with more difficulty with the added burden of being ill.

 

[Demepivo]

@hellytheelephant you can argue which section it goes into. I had a quick look look through the sub-sections but didn't dwell too long as I had brain fog.

Main thing is that people can read it and decide whether to comment or not

 

[notmyself]

I can be a source of strength to have some spiritual grounding. However I have found that another attitude toward chronic illness that is unhelpful is the There Is a Purpose to my illness, there must be something I must learn from it. To me this sounds like we deserve to be ill--we are being punished for not being good enough. We need this illness to teach us a lesson. What I ask, about all those other people who might need the same lessons in life but swan through with near perfect health and few or none of life's severe traumas?

Not to mention it's pretty arrogant if someone in perfect health is proffering this advice. That's not to say we stop learning 'life's lessons' since we are still learning how to live like anyone else just with more difficulty with the added burden of being ill.

But still we need a purpose in life.Maybe is easier for some to deal with it ,thinking that is happen for a reason all this,to learn something i don't know.i will find a purpose in this only if i somehow i recover and i will know to apreciate the little things that i was taking for granted before..This disease will acctually be a good thing,if it would not last that long or forever..Imagine to suddenly wake up healthy one day after all of this,you will cry of joy ,just by doing normal stuff that you used to do before gettin sick without paying any attention to them...

 

[hellytheelephant]

For me it is not about the 'purpose' of being ill...but rather finding and being grateful for the treasures among the sh*te.

 

[notmyself]

For me it is not about the 'purpose' of being ill...but rather finding and being grateful for the treasures among the sh*te.

haha..yes is big pile of sh*te

 

[TiredSam]

For me it is not about the 'purpose' of being ill...but rather finding and being grateful for the treasures among the sh*te.

Brilliantly said

 

[Woolie]

i really wish i never find this forum,but now is to late,i will never be able to delete this kind of information from my head.

Hang on, hang on a minute here.

ME is a placeholder name for a bunch of complaints that have not yet been associated with a well-known disease process. The complaints share some features in common, but there's also a lot of variability. It might turn out that different people with the ME diagnosis have a different underlying dysfunction.

So when you hear "its possible to die from ME", than means "A small number of people who have also been given a diagnosis of ME have died from what looks to be the consequences of their illness".

These people might turn out to have the same illness as you, or a different one. We don't know yet.

The much bigger problem is that so many people are condemned to live on indefinitely with awful symptoms.

 

[hellytheelephant]

Hang on, hang on a minute here.

ME is a placeholder name for a bunch of complaints that have not yet been associated with a well-known disease process. The complaints share some features in common, but there's also a lot of variability. It might turn out that different people with the ME diagnosis have a different underlying dysfunction.

So when you hear "its possible to die from ME", than means "A small number of people who have also been given a diagnosis of ME have died from what looks to be the consequences of their illness".

These people might turn out to have the same illness as you, or a different one. We don't know yet.

The much bigger problem is that so many people are condemned to live on indefinitely with awful symptoms.

Thank you @Woolie- you express so well, what i was trying to say!