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

[desmalia]

I totally agree, Colleen! If our medical system focused on preventative treatment it would be in much better financial shape, and overall Canadians would be much healthier than we are (same for other countries, as you mentioned). Unfortunately, the pharmaceutical companies have a lot of control over all of this, so we're limited in what we can do as a nation.

 

[Colleen1]

I totally agree, Colleen! If our medical system focused on preventative treatment it would be in much better financial shape, and overall Canadians would be much healthier than we are (same for other countries, as you mentioned). Unfortunately, the pharmaceutical companies have a lot of control over all of this, so we're limited in what we can do as a nation.

....so true and meds are considered main stream / primary treatment as opposed to alternative treatments that really shouldn't be considered such. They should become mainstream especially for certain illnesses.

 

[Colleen1]

I pray you all have a very blessed Easter!
What a wonderful gift God gave us!


​

God Bless You!
You're in my prayers.
Glorious Day Casting Crowns Worship Video with lyrics - YouTube!
​

 

[desmalia]

AMEN, and happy Easter to you!

 

[Colleen1]

AMEN, and happy Easter to you!

Thank you and you are very welcome.
Take care; you're valuable.


​

 

[RuthD]

I have multiple chronic illnesses and have heard it all, like you have. Mostly people have minimized what I am going through. That hurts, too. You all are in my prayers.

 

[drjean]

WOW. This could really be a good, and long, thread! (Please let's not deteriorate into health care systems or mangled care issues! THAT'S TOO depressing!)

Most people just really don't know what to say when they find out about your illness/disabilities...which is probably why so many of us say "fine" in reply to "how are you feeling?" True, for most people, that's the only reply---but I, too, feel like a liar if it just isn't true! (Or if I have to "rationalize" the meaning of "fine" at that particular time! )

I've come up with various responses to people who ask how I am... for those that I don't know at all, or for those I know don't really want to know... I don't answer the question but return it to them, " oh! How are you???"

Or I say something like, "I've had < worse> <better> days"... and smile.
"I'm doing okay really", "I had a tough night but I'm not too bad right now" etc.

I find the better phrase I can come up with, the better I feel and the better I feel about replying.

Now, the thread subject line caught my attention... and I was going to copy and paste the list of what we came up with...but alas maybe later?

What NOT to say to someone who is suffering?

Well, my dad never believed I was really injured until he was dying. Unfortunately one of his phrases that really showed me he just didn't understand (or couldn't accept that I was disabled) was... "Why don't you settle up with the insurance company and then you won't have to go to all these doctors?" sigh. I had a son say that I could "no longer be" his mother until I "quit being disabled and follow Christ." (He has repented and understands now, now that he is a DAV.) Actually, both my sons and my (now former) husband left me because "they couldn't live with my pain". O. K. But I have to. Actually, I'm sure many of you, like me, have lost their former friends as well... because they just couldn't handle what we go through and their encouragement was empty and devoid of understanding. Or, they just didn't have time for us any more, we didn't fit into their schedule, we couldn't be spontaneous any more etc.

Ok.. things not to say:

• You better hurry up and get well and get back to work.
• Well, you don't look sick.
  

• Hang in there.

• How are you doing?

You just....(believe me, anytime someone uses the word "just" the red flag goes up!)

• You just need to get out of the house more.
• You just need to try a new doctor.
• You just need to quit being so depressed.
• You just need to ignore the pain.
• You should just quit taking all the medicine and trust God.

• You're sick again?

• No pain, no gain.

• Hmm you didn't try...xxx (or If you don't want to try xxx) then you must not really want to get better.

• If you stop wallowing in your pity you wouldn't be sick.
  

• Just get over it.
• Snap out of it and move on with your life.
  

• I wish I could sit around all day and not work.
  

• I'd be sick too if I went to all the doctors you go to.

• Can't they find what's wrong with you yet?
  

• Some people go through anything for a little attention.

• You can't be in that much pain.
• (I even had a neurologist say I couldn't have such pain as he had a slipped disk in his back and was still working!)
  

• Lot's of people work while in pain (or sick).

• Things could be worse (You could be worse).

• There'll be blessings coming from this because of your suffering.

• If you hadn't xxx this wouldn't have happened to you.(or If you HAD just xxx....)
• Umm... do you know you parked in a handicapped parking spot?
  

 

[desmalia]

I'm so sorry you've been through all of that, Jean.

I'd have to say that since my diagnosis, I've largely had support at work and from my family, though they're each handling it differently and don't always know what to say or do to be helpful. And I can definitely see how it will wear on my husband as things progress. Again, thankfully he's a "caregiver" type of personality.

Just today one dear friend (meaning well) strongly suggested that it's "mind over matter" based on what she's been through. And she has been through a LOT. But there are real physical problems that can't always be conquered with just will power. Having said that, attitude is crucial. But still, it is frustrating to hear when you battle fatigue, pain, etc, doing your best to stay active already.

I've also noticed that men tend to go into awkward silence rather than risk saying the wrong thing. It's kinda funny to see sometimes.

 

[Colleen1]

I have multiple chronic illnesses and have heard it all, like you have. Mostly people have minimized what I am going through. That hurts, too. You all are in my prayers.

Thanks Ruth! It isn't easy. I'll pray for you.

 

[Colleen1]

I've come up with various responses to people who ask how I am... for those that I don't know at all, or for those I know don't really want to know... I don't answer the question but return it to them, " oh! How are you???"

Or I say something like, "I've had < worse> <better> days"... and smile.
"I'm doing okay really", "I had a tough night but I'm not too bad right now" etc.

....
Well, my dad never believed I was really injured until he was dying. Unfortunately one of his phrases that really showed me he just didn't understand (or couldn't accept that I was disabled) was... "Why don't you settle up with the insurance company and then you won't have to go to all these doctors?" sigh. I had a son say that I could "no longer be" his mother until I "quit being disabled and follow Christ." (He has repented and understands now, now that he is a DAV.) Actually, both my sons and my (now former) husband left me because "they couldn't live with my pain". O. K. But I have to. Actually, I'm sure many of you, like me, have lost their former friends as well... because they just couldn't handle what we go through and their encouragement was empty and devoid of understanding. Or, they just didn't have time for us any more, we didn't fit into their schedule, we couldn't be spontaneous any more etc.

Ok.. things not to say:

• You better hurry up and get well and get back to work.
• Well, you don't look sick.
  

• Hang in there.

• How are you doing?

You just....(believe me, anytime someone uses the word "just" the red flag goes up!)

• You just need to get out of the house more.
• You just need to try a new doctor.
• You just need to quit being so depressed.
• You just need to ignore the pain.
• You should just quit taking all the medicine and trust God.

• You're sick again?

• No pain, no gain.

• Hmm you didn't try...xxx (or If you don't want to try xxx) then you must not really want to get better.

• If you stop wallowing in your pity you wouldn't be sick.
  

• Just get over it.
• Snap out of it and move on with your life.
  

• I wish I could sit around all day and not work.
  

• I'd be sick too if I went to all the doctors you go to.

• Can't they find what's wrong with you yet?
  

• Some people go through anything for a little attention.

• You can't be in that much pain.
• (I even had a neurologist say I couldn't have such pain as he had a slipped disk in his back and was still working!)
  

• Lot's of people work while in pain (or sick).

• Things could be worse (You could be worse).

• There'll be blessings coming from this because of your suffering.

• If you hadn't xxx this wouldn't have happened to you.(or If you HAD just xxx....)
• Umm... do you know you parked in a handicapped parking spot?
  

Yes, I too have some planned responses and this helps especially when I'm having a very off day with lots of pain and fatigue and it's a chore just to think.

Yes, I think we all have had to 'adjust' relationships or should I say we needed to adjust to changes in relationship due to a lack of awareness / sensitivity / caring from others in our lives. This by no means is easy and can sting during an already difficult time.

Yes, I have heard those same things. You are not alone. It so good to talk and remind ourselves we are not alone.

 

[Colleen1]

Just today one dear friend (meaning well) strongly suggested that it's "mind over matter" based on what she's been through. And she has been through a LOT. But there are real physical problems that can't always be conquered with just will power. Having said that, attitude is crucial. But still, it is frustrating to hear when you battle fatigue, pain, etc, doing your best to stay active already.

I'm happy you are finding some more understanding since your diagnosis.

Yes, I find that one of the hardest things to hear. Some people just don't seem to understand there are physical restraints etc. Your comment is true and I can relate.

 

[drjean]

thanks.

The "mind over matter" is a principle based in God's Word. It does have a negative connotation because of when "psychosomatic" terms were considered "all in your head" instead of what they are: mind-body.

I won't debate on this thread about healing, as we all have different opinions and experiences.

BUT the "attitude" towards yourself, your illness, your life is a huge power behind your illness. HUGE! If we can "have the mind of Christ" -- "Let this mind be in your which was also in Christ Jesus" then at the very least our illness will be "acceptable" and manageable.

I've always said It isn't what we go through, it is how we go through it. As we read in God's Word we see stories of events the great prophets and kings went through on their journey to trust God. As they conquered one battle, then another, perhaps more difficult came along. Until they "got it" like Job did.

The battles we face are nothing compared to God and His love, will, perspective etc. IS there anything too hard for THEE? Nothing is too difficult for God. What then, is the difference between a Christian who suffers miserably and a Christian who doesn't?

We each have our own path. It's important to remember that God does not condemn us no matter what we go through. He is there for us each step of the way. It's much much easier when we keep our thinking as close to God's as we can. This is "mind over matter"... this faith in God and keeping our thoughts focussed on Him...that makes things bearable.

 

[desmalia]

Definitely agree, Jean. I know that my illness was no surprise to God, and in fact it was always part of His plan, and He always had plans to use it for His glory, whether He heals me or uses my weakness. Nothing but hope in that!

 

[Colleen1]

thanks.

The "mind over matter" is a principle based in God's Word. It does have a negative connotation because of when "psychosomatic" terms were considered "all in your head" instead of what they are: mind-body.

I won't debate on this thread about healing, as we all have different opinions and experiences.

BUT the "attitude" towards yourself, your illness, your life is a huge power behind your illness. HUGE! If we can "have the mind of Christ" -- "Let this mind be in your which was also in Christ Jesus" then at the very least our illness will be "acceptable" and manageable.

I've always said It isn't what we go through, it is how we go through it. As we read in God's Word we see stories of events the great prophets and kings went through on their journey to trust God. As they conquered one battle, then another, perhaps more difficult came along. Until they "got it" like Job did.

The battles we face are nothing compared to God and His love, will, perspective etc. IS there anything too hard for THEE? Nothing is too difficult for God. What then, is the difference between a Christian who suffers miserably and a Christian who doesn't?

We each have our own path. It's important to remember that God does not condemn us no matter what we go through. He is there for us each step of the way. It's much much easier when we keep our thinking as close to God's as we can. This is "mind over matter"... this faith in God and keeping our thoughts focussed on Him...that makes things bearable.

I believe that physiology is important to acknowledge. However, many have assumed in my life and other ill people's lives that because we are ill it means we don't have enough faith or we aren't aware of physiology and how it affects our lives. The truth is, many of us who are ill are vastly more aware of this issue because we are the ones experiencing the illnesses. We just rather not over-emphasize or inappropriately attritribute cause of illness. Having illness definitely doesn't mean we lack faith. It is a very trying and testing ordeal to live through. It's not only the illness and symptoms but dealing with finances, healthcare issues and unawareness. We need to allow the Holy Spirit to be the guide in peoples lives and let go and let God. One thing I've learned is that people have their own pain and we can't always assume and know anothers thoughts and mind. But yes, I do think physiology is important to acknowledge.

 

[Colleen1]

I thought some of you may enjoy and appreciate this pic.



​

 

[pink kitty]

lol! I love the picture! She looks how I'm feeling for sure!

 

[Colleen1]

lol! I love the picture! She looks how I'm feeling for sure!

lol...not that it's funny mind you but yes, I'm sure many of us can relate.

 

[desmalia]

I wish I looked that cute when I'm that tired! lol

 

[drjean]

(I enjoy the program on animal planet "Too cute" )

I think we're all saying the same things... and a few of us are adding the psychological technique of having the mind of Christ with regards to a good viewpoint of suffering.

HOWEVER, it is not something easily conveyed by another person, and all too often they don't phrase it "right" and we become defensive. It's one thing to encourage us to keep on the right path of seeking God and trusting Him while we engage the physical (and mental) suffering... but have them phrase it for what it is (fully having the mind of Christ and His attitude about it) and it just doesn't feel like support. Nope, it don't.

I CAN do all things through Christ Who strengthens me. It doesn't mean it isn't a huge struggle at times.

 

[Colleen1]

I wish I looked that cute when I'm that tired! lol

I hear ya! Oh I'm hearing ya!