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

[motherprayer]

You're welcome. Glad you found this thread helpful. God bless.

And God bless you as well!

 

[1hope]

What not to say to people who are Chronically ill... "Oh, I have the exact same thing - sometimes!"

 

[Colleen1]

What not to say to people who are Chronically ill... "Oh, I have the exact same thing - sometimes!"

Oh, yes, that can seem rather invalidating especially if it's a chronic illness cause it isn't a 'some time' illness.

 

[CounselorForChrist]

Mmm. Another one for me is because I have extremely bad migraines about half the month or more. Sometimes people will say "I know what thats like. I have a headache every so often!".

While I appreciate them trying to empathize with me, having a headache is not the same as a migraine. Especially if you have one like every month or two. Not that I do the comparison stuff but sometimes some things are worse then others.

Such as I have only had 4 grand mal seizures and currently sleep ones that do nothing to me. I never tell someone who has them every day "I understand!". Because while I know the feeling of a seizure, I can't imagine having one every day.

 

[Colleen1]

Mmm. Another one for me is because I have extremely bad migraines about half the month or more. Sometimes people will say "I know what thats like. I have a headache every so often!".

While I appreciate them trying to empathize with me, having a headache is not the same as a migraine. Especially if you have one like every month or two. Not that I do the comparison stuff but sometimes some things are worse then others.

Such as I have only had 4 grand mal seizures and currently sleep ones that do nothing to me. I never tell someone who has them every day "I understand!". Because while I know the feeling of a seizure, I can't imagine having one every day.

Yes, I understand where you are coming from. I have migraines as well. From some types of cigarette smoke they are instantaneous. My building has lots of smoke. Even though I have 2 air purifiers. I feel for you because statements like that can be very invalidating. One can be ill enough to not be able to work and the other is moving around all peppy and needs to stop for a half hour to catch their breath. While others, are at a full dead stop for days / 24 hours a day. While I agree, one shouldn't compare, one still would like to be validated rather than feeling dismissed as our struggles being no 'big' thing.

 

[CounselorForChrist]

While I agree, one shouldn't compare, one still would like to be validated rather than feeling dismissed as our struggles being no 'big' thing.

That is true. Often when someone says they understand, they are simply meaning well since they may have some similar. I know some of my smaller issues, I sometimes will tell someone I can sort of understand what its like and they get mad and say I can't since theirs is worse. It does make me feel like I don't matter even if my problems is smaller.

I guess the subject is very complicated really.

 

[Colleen1]

That is true. Often when someone says they understand, they are simply meaning well since they may have some similar. I know some of my smaller issues, I sometimes will tell someone I can sort of understand what its like and they get mad and say I can't since theirs is worse. It does make me feel like I don't matter even if my problems is smaller.

I guess the subject is very complicated really.

True. Dealing with illness is hard all way round. I just wish some weren't so dismissive. For so long, and still now, illnesses such as Fibromyalgia and Chronic Fatigue Syndrome were so misunderstood and dismissed. Even now some simply chalk it up to depression. Depression isn't an easy illness to deal with but, I guess, my point is, it's nice to feel understood.

 

[Chris516]

I just noticed this thread, and can definitely say that, if someone said to me, that they felt like me, sometimes. I would tell them to be more specific. Because I don't have just one chronic physical health problem, I have three and two of the three are congenital. Anyone of which could kill me easily, if they were not controlled.

 

[Colleen1]

I just noticed this thread, and can definitely say that, if someone said to me, that they felt like me, sometimes. I would tell them to be more specific. Because I don't have just one chronic physical health problem, I have three and two of the three are congenital. Anyone of which could kill me easily, if they were not controlled.

Yes, I find it can be helpful to ask people to clarify their response especially if it's rather inappropriate. It can make people stop and think and can help us make a point.

 

[Chris516]

Yes, I find it can be helpful to ask people to clarify their response especially if it's rather inappropriate. It can make people stop and think and can help us make a point.

Yes, I would also tell them, 'I wouldn't wish in a million years, that you had what I have. So don't go telling me, you think you know what is like'.

They would probably be shell-shocked, looking at me with their eyes' bugging out, and probably start feeling totally embarrassed.

 

[Colleen1]

^^It just gets to a point that one gets tired of others always trying to control and manipulate according to their own agenda etc. It's not like the ones who are pushy have ever stopped to ask what 'I' need or what my view is...apparently they just know me and how I feel so well.... .....NOT.... It's tiring.

 

[Chris516]

^^It just gets to a point that one gets tired of others always trying to control and manipulate according to their own agenda etc. It's not like the ones who are pushy have ever stopped to ask what 'I' need or what my view is...apparently they just know me and how I feel so well.... .....NOT.... It's tiring.

I agree definitely!!!

 

[Restrain]

Just caught up on this post. As a quickie, I'm dealing with a degenerative neuro-muscular and neurological issue (like MS/MD but not - no definitive tests like those). I've gotten the "you don't look disabled" stuff. When I was in a wheel chair, I would be ignored and the wife, who would be pushing me around (there's a line there )would be the one who would be talkd to, as if I was not capable of converstion.

After 25 years, what I have decided to do is IGNORE these slights and forgive them. I waste my breath trying to educate them. I ignore the bad looks I get when crusing in my power chair. They can walk a whole lot better than I can get around, even in the power chair. I work around the fact that I cannot go look at a rack of clothes in a store because there's no room for me to get between the racks in the chair, and often go shop somewhere else.

Sometime back, I prayed for patience. Well, I have it now.

 

[Colleen1]

I agree definitely!!!

Glad to know others understand.

 

[Colleen1]

Just caught up on this post. As a quickie, I'm dealing with a degenerative neuro-muscular and neurological issue (like MS/MD but not - no definitive tests like those). I've gotten the "you don't look disabled" stuff. When I was in a wheel chair, I would be ignored and the wife, who would be pushing me around (there's a line there )would be the one who would be talkd to, as if I was not capable of converstion.

After 25 years, what I have decided to do is IGNORE these slights and forgive them. I waste my breath trying to educate them. I ignore the bad looks I get when crusing in my power chair. They can walk a whole lot better than I can get around, even in the power chair. I work around the fact that I cannot go look at a rack of clothes in a store because there's no room for me to get between the racks in the chair, and often go shop somewhere else.

Sometime back, I prayed for patience. Well, I have it now.

Yes, I agree we need to forgive. I've found that the way to get to forgiveness is to acknowledge the reality of things and then express what's really going on. Then I can find a way with God's help to move on. I know some people just don't understand and some need to experience things for themselves in order to get to the point of understanding. I just think we need boundaries and ways of responding to things when we aren't able to simply ignore it. Yet, it feels good to be able to talk to others who do understand.

Sorry to hear of your struggles... may God bless you.

 

[drjean]

I hear ya all. Yes, hidden disabilities are really misunderstood. When someone implies that "you don't look disabled" phrase I tell them "God's been good to me that way, not making me look as bad as I feel". lol But then there's the other direction, as my current pastor seems not to want me to do anything in the church as it might exacerbate my symptoms. IDK ...it made me feel like obama did when he said those of us who are elderly or disabled should just go home and die since we have nothing to contribute to society like the 18-40 yr olds do.

I am mounting energy (mind over matter) to once again (and maybe for last) attack the legal system and insurance company. My MD has been writing scripts and giving depos insisting I need an accessible van and motorized wheelchair for 10 YEARS... and she has again so I'm going to give it another push. Pray.

I was recently attacked on another site by a "Christian" "friend" who tried to shoot me down for getting revenge on a lady who parked in the cross hatch zone AND parked so close the policewoman tried 3 x to enter my car so she could pull it out so I and my service dog could leave.... I don't understand how that is revenge...just because the woman parked illegally, inconvenienced me and caused me more suffering (waiting nearly an hour for the police to come help, in 90 degree heat no less)...and so she got a ticket ($250)...and I'm being vengeful???? I don't need Christian friends like that.

Thanks for letting me rant. Be well my sisters/brothers!

 

[Colleen1]

^^ I hope things work out well for you. Battling the system here in Canada is hard too. Took me a decade to get properly diagnosed...well a decade of actively trying.... to get appropriate help. A few docs figure I was ill long before then but we get so accustomed to feeling a certain way and 'dealing' with it day in and out and some of us are constantly told 'it's normal' even when we get to the point we can no longer get out of bed or we pass out. Yeah. It's frustrating...

Yes, there are people who can be purposefully nasty ...still have a fair few of those in my life and it's no fun at all....smacks of hinderance etc...but this is not the thread to discuss that topic... but yes I feel for you.

 

[Nroley]

What I hate is when someone knows what your illness is then tries to compare it to a less serious condition, which makes it sound it's not a big deal, and act like its the same b/c it involves the same area of your body.

 

[EstherStar]

I like it when people identify with me over an issue. It levels the ground a bit.

Saying that i think its probably better not to have rules about how you love. As long as you are sincere, can listen and have genuine compassion its better to be yourself. I know women who have trained as psychotherapists for instance and they come across as cold, clinical and clearly in the job for the wrong reasons.

Ultimately some have more of a gifting in terms of mercy than others but with Love its unlikely you'll get it wrong.

 

[Colleen1]

What I hate is when someone knows what your illness is then tries to compare it to a less serious condition, which makes it sound it's not a big deal, and act like its the same b/c it involves the same area of your body.

I can understand that could be invalidating. It's nice to be understood and acknowledged for who we are and what is really going on in our lives.