What NOT to say to people who are crhonically ill / disabled

[rowantree]

"I know you're a bit pernickety with your food." This was said to me when I was really ill and still going to work, and could only eat certain, very limited foods otherwise I was in agony. Hmmm!

 

[rowantree]

Oh and, "You should live in a shed at the bottom of your garden," when I had just been discharged from hospital after being in for three months with T.B. I was perfectly safe to be amongst people, although rather weak at that stage, but these were Christians who said this to me! The Christians at my Church sent a lady to our house to ask me not to go to Church because the other ladies were scared of being near to me. How's that for supposed Christians?

 

[Colleen1]

"I know you're a bit pernickety with your food." This was said to me when I was really ill and still going to work, and could only eat certain, very limited foods otherwise I was in agony. Hmmm!

I have to pay attention to my foods too. I take this part of my treatment plan to be just as important as medications would be.

Funny how we seem to hear a lot of unnecessary feedback from people who don't understand or even really know what's going on in our lives.

 

[rowantree]

I've given up listening any more to the unhelpful comments, but it can hurt if you are not wise to them.

 

[Colleen1]

I've given up listening any more to the unhelpful comments, but it can hurt if you are not wise to them.

Yes, very. Just like there are kind understanding people, there can be insensitive one's who feel they know what's best for our lives even though they really don't even understand our circumstances. A few weeks ago, I had a very impertinent and insensitive phone call. It was rather shocking in that this person made a whole lot of assumptions and it didn't stop her from continuing to be even more insulting by asking impertinent questions and further insulting me by by proceeding to tell me what I needed to do in my life. ...so very unhealthy and unnecessary.

 

[drjean]

OH! At a church dinner I visited I was careful in what I ate... I have food allergies, some foods add to my pain, I have TMD that can cause the jaw to not function (chew) well at times...

At the next event of eating ... one of the women said, OH I thought you were a vegetarian! I didn't even ask where she got that idea...I knew it was her watching what I chose to eat at the previous dinner!

But everyone gets that, you know, not just those of us with chronic conditions. I think it is that we are sensitive to it because of our paths in life. And yes, while we don't wish for people to say the set cliches, it's good to remember that the people who use them use them on everyone!!!

 

[rowantree]

I used to get very hurt by some of these things but now I am older and wiser (I THINK !) I have learnt not to care too much what others say to me, and that truly has come with age. I feel for those who still get hurt by these things though. I just wish that people were more understanding to those who are sick.

 

[Colleen1]

I used to get very hurt by some of these things but now I am older and wiser (I THINK !) I have learnt not to care too much what others say to me, and that truly has come with age. I feel for those who still get hurt by these things though. I just wish that people were more understanding to those who are sick.

Yes, I find the same. However, I find that when we are having an already 'full' day it can be a bit harder.

 

[drjean]

Yes, we can toughen up some... but I do think there will always be a need to educate the ignorant... well, at least until Jesus comes!

 

[Colleen1]

WHAT A LIFE...

National Fibromyalgia & Chronic Fatigue Syndrome
Awareness Day is May 12!
A podcast worth listening to:
Invisible Disabilites | Radio | Joni and Friends

 

[rowantree]

Agree with you Colleen and Dr. Jean. I feel sad because so often it is the people in the Church, on whom we should be able to rely for compassion and understanding, who say the worst things. It is so hard to find a Church where you can be, where you are understood. That is my biggest problem at the moment. Sometimes, whatever you say, and however you say it, you know that you are not being heard. Church is one of the hardest places to be in my experience. Sad.

 

[Colleen1]

Agree with you Colleen and Dr. Jean. I feel sad because so often it is the people in the Church, on whom we should be able to rely for compassion and understanding, who say the worst things. It is so hard to find a Church where you can be, where you are understood. That is my biggest problem at the moment. Sometimes, whatever you say, and however you say it, you know that you are not being heard. Church is one of the hardest places to be in my experience. Sad.

I empathize with you. It's not easy. The Sunday School teacher in the adult class said something that was so very apt and hit home this morning in regards to an issue I'm dealing with. He said the sin of pride is hard to see in ourselves. I agree. So many times things get said that are not wise. One church message was hard to hear a couple weeks ago and it's not because of conviction. It was issues relating to the assumptions of why people are ill....very unaware and insensitive. Not easy to bear especially on low days. Some days we are called to do more than 'grin and bear'. We need to ask for clarification and be assertive. Thanks for posting and being so authentic.

 

[desmalia]

There are a lot of churches that teach all illness is a result of personal sin, and particularly lack of faith. This is false doctrine and extremely harmful. I highly recommend avoiding such places as they do not glorify God and can do tremendous damage, often to a degree of being spiritual abuse.

Having said that, I think it's also important to remember that Christians are just as fallen as everyone else, just forgiven by the grace of God. So people in church don't always respond as they should when faced with a person who is ill or disabled. It can be a situation that God uses to teach us patience and even maybe to help disciple them so they understand how to have mercy on those who are not well.

 

[Colleen1]

There are a lot of churches that teach all illness is a result of personal sin, and particularly lack of faith. This is false doctrine and extremely harmful. I highly recommend avoiding such places as they do not glorify God and can do tremendous damage, often to a degree of being spiritual abuse.

Having said that, I think it's also important to remember that Christians are just as fallen as everyone else, just forgiven by the grace of God. So people in church don't always respond as they should when faced with a person who is ill or disabled. It can be a situation that God uses to teach us patience and even maybe to help disciple them so they understand how to have mercy on those who are not well.

Yes, so very well said. Excellent post. Thanks so very much.

 

[pink kitty]

Agree with you Colleen and Dr. Jean. I feel sad because so often it is the people in the Church, on whom we should be able to rely for compassion and understanding, who say the worst things. It is so hard to find a Church where you can be, where you are understood. That is my biggest problem at the moment. Sometimes, whatever you say, and however you say it, you know that you are not being heard. Church is one of the hardest places to be in my experience. Sad.

I'm praying for you

 

[rowantree]

pink kitty, thankyou for your prayers. God bless you.

 

[Colleen1]

pink kitty, thankyou for your prayers. God bless you.

I'm glad you've posted here. I hope you feel welcome and at home here to vent all you want. Not easy to not feel validated. Take care of yourself; you're valuable.

 

[rowantree]

Thankyou Colleen. You are very kind. I do feel at home here. You have made me welcome.

 

[Colleen1]

Thankyou Colleen. You are very kind. I do feel at home here. You have made me welcome.

Aww, you are very welcome. Thank you for your comment.

 

[desmalia]

I came across this site today, and am really enjoying it. Thought people here might also find it useful too. Even the site name is great!
ButYouDontLookSick.com: A community for support, education, and inspiration.


In particular, I really enjoyed this video about time & energy management while dealing with chronic illness.
The Spoon Theory written by and spoken by Christine Miserandino - YouTube