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

[motherprayer]

Oh, I so know what you mean or they try to prescribe stuff for you. Ugh! I usually say "yes, I've seen 'specialists' and have discussed my treatment plan with people who work with these illnesses". I emphasize this and they usually get the point....'Yes, they are specialized in this and 'you' are not.'

Oh yea, "such and such worked for me, you should try it." Before even asking what I've tried (lol which is about everything) and with fibro, I get a lot of people saying if I drink more water all my symptoms would go away. Ha. If only it were that simple :/

 

[desmalia]

This is not exactly a chronic illness related issue, but it's too funny not to share. I'm not Celiac, but I do have a very strong sensitivity to gluten, so I don't eat it anymore. I had a good laugh at this one! I've actually had to deal with most of these responses!

Stuff People Say to Celiacs (by Better Batter) - YouTube

 

[desmalia]

Exactly! It took me THREE YEARS to convince my own husband I was sick, that I wasn't claiming to be in pain just for attention! Thank God he recognizes it now!

I hear ya. My husband thought I was just lazy before I got my MS diagnosis, which is the cause of my chronic fatigue. Now he knows better and is much more sympathetic.

 

[Colleen1]

Oh yea, "such and such worked for me, you should try it." Before even asking what I've tried (lol which is about everything) and with fibro, I get a lot of people saying if I drink more water all my symptoms would go away. Ha. If only it were that simple :/

Yes, I know. It can be quite annoying. People like simplifying and catagorizing things and with these illnesses that cannot be done. There are so many dynamics and facets to them that that would be impossible. That's why researching and treating these illnesses can be difficult. The fact remains these are our own bodies and we live in them 24 hours a day every day so when it comes to understanding and knowing how we feel, what we've tried, what works etc. we are pretty much the experts. Meaning, it would be unfair for me to tell anyone how they feel etc. just as it would be unfair of them to discount my perspective on my own body and life. I wish some people would come to terms with that especially when it comes to people saying I'm sick because I lack faith..... So unfair considering it takes a whole lot of faith to live through such trials.

 

[Colleen1]

Yes, I've gone through many years of misdiagnosis and many unpleasant attitudes from people and professionals alike. It has not been fun and at times MS can be compared to the illnesses of Chronic Fatigue Syndrome and Fribromyalgia because it too was in doubt before they came up with solid ways of diagnosing etc. Also there are similar symptoms and it was one of the considered illnesses when diagnosing me. Very difficult. I however, have chosen not to take addictive medication because I have some bad side effects to meds and addiction is never something that is a good problem to acquire. It can be heart-wrenching. That's my take on that issue. For me it can also mask problems rather than healing them so I can easily over-exert and become more ill.

 

[renewed21]

Yes, I know. It can be quite annoying. People like simplifying and catagorizing things and with these illnesses that cannot be done. There are so many dynamics and facets to them that that would be impossible. That's why researching and treating these illnesses can be difficult. The fact remains these are our own bodies and we live in them 24 hours a day every day so when it comes to understanding and knowing how we feel, what we've tried, what works etc. we are pretty much the experts. Meaning, it would be unfair for me to tell anyone how they feel etc. just as it would be unfair of them to discount my perspective on my own body and life. I wish some people would come to terms with that especially when it comes to people saying I'm sick because I lack faith..... So unfair considering it takes a whole lot of faith to live through such trials.

+1,000,000

 

[renewed21]

Yes, I've gone through many years of misdiagnosis and many unpleasant attitudes from people and professionals alike. It has not been fun and at times MS can be compared to the illnesses of Chronic Fatigue Syndrome and Fribromyalgia because it too was in doubt before they came up with solid ways of diagnosing etc. Also there are similar symptoms and it was one of the considered illnesses when diagnosing me. Very difficult. I however, have chosen not to take addictive medication because I have some bad side effects to meds and addiction is never something that is a good problem to acquire. It can be heart-wrenching. That's my take on that issue. For me it can also mask problems rather than healing them so I can easily over-exert and become more ill.

Colleen, you a very strong person to persevere through your illnesses. I can totally relate to the frustration of having to go through disability and chronic sickness and the lack of undertanding and comprehension from people, much less medical professionals.

But the hardest part is when those close to you dont understand or treat you bad besause of your illness (i.e. mock, belittle). My ex did that to me and the hurt and pain it caused sucked real bad especially when going through 5 years of intense chemo.

please don't get me wrong, I'm not whining, just saying I get it.

 

[Colleen1]

+1,000,000

Thanks

 

[Colleen1]

Colleen, you a very strong person to persevere through your illnesses. I can totally relate to the frustration of having to go through disability and chronic sickness and the lack of undertanding and comprehension from people, much less medical professionals.

But the hardest part is when those close to you dont understand or treat you bad besause of your illness (i.e. mock, belittle). My ex did that to me and the hurt and pain it caused sucked real bad especially when going through 5 years of intense chemo.

please don't get me wrong, I'm not whining, just saying I get it.

I understand and I don't see you as whining. I get it. It's nice to have a safe spot to come to and have the people we care about understand us.

 

[CounselorForChrist]

Seems about right (the list). I'm not physically disabled (my limbs work...etc), but my disabilities are often hard to notice. When I do tell people they either say many of those listed things.

I think the hardest part comes when people start to avoid you because of what you have. In my case I have some weird vision issue that on rare occasions give me a seizure. So crowded malls or place like Best Buy (lots of colors, lights, people....stimulation) causes me to become sick. So because of it I have no real friend offline because I can't be "fun". Well and I am on SSI which means I have no money to spend really.

BUt lets face it they are right. I enjoy not being able to hang out at the mall, not bowling, not being at big parties. Just as I enjoy getting comments when I show my food card to buy something. Its the best part of my day!
^sarcasm^

lol. I've learned to deal with it better over the years. I still get a bit aggravated though when people use christian insults like I don't pray hard enough...etc. I'm happy I have my fiance is not like that. She doesn't baby me either.

 

[Colleen1]

Seems about right (the list). I'm not physically disabled (my limbs work...etc), but my disabilities are often hard to notice. When I do tell people they either say many of those listed things.

I hear you. I have what some might call invisible disabilities. People can look at me and talk to me at times and think, "what's wrong with you". The truth is that when I feel well I generally go out and when I don't, I don't go out and many people don't see me or talk to me. I have Chronic Fatigue Syndrome, Fibromyalgia and extensive Chronic Myofascial Pain. These illnesses can be so misunderstood and dismissed / down-played. This can be rather disheartening when one is trying to get help etc. We all want to be understood but...this always isn't the case. I feel for you.

I think the hardest part comes when people start to avoid you because of what you have. In my case I have some weird vision issue that on rare occasions give me a seizure. So crowded malls or place like Best Buy (lots of colors, lights, people....stimulation) causes me to become sick. So because of it I have no real friend offline because I can't be "fun". Well and I am on SSI which means I have no money to spend really.

BUt lets face it they are right. I enjoy not being able to hang out at the mall, not bowling, not being at big parties. Just as I enjoy getting comments when I show my food card to buy something. Its the best part of my day!
^sarcasm^

Yes, that can be difficult. I can't say I completely understand what you are going through and we each have our own experience. I do however, have had problems to various degrees with some of what you have described. It can really limit one's fun and living and yes income. So we not only deal with illnesses etc. but we can also be at a low when it comes to income too which is definitely an added stressor. Ick!

lol. I've learned to deal with it better over the years. I still get a bit aggravated though when people use christian insults like I don't pray hard enough...etc. I'm happy I have my fiance is not like that. She doesn't baby me either.

Oh wow do I understand what you are saying here. Or when prayer is not used as it's intended but instead to lecture you or guilt you. So not healthy or biblical in my opinion. Prayer is for relationship with God and not to hurt others. Yes, a good sense of humour can really really help me and be a blessing. Even if I'm tearing up through the laughter or vice versa.

 

[CounselorForChrist]

Yeah invisible disabilities, that was the word. My mom has fibromyalgia and some times people will be like "Are you sure you just didn't strain a muscle?". Or if she complains about the pain enough they say shes faking it for attention.

Laughter is so important when disabled. The ones who can' laugh live in such anger in sadness. I remember one time someone brought up I wasn't praying enough and then they added "I know this makes people angry, which just means Gods convicting you because you know you need to pray harder!". While I am sure some people would have exploded my response was "Maybe Gods convicting you of not praying enough. They say those who point out things in others often do it so it makes them feel better about the fact they have the same issue!"

This persons faced cringed up and they screamed something at me along the lines of "<swear words> you! I was trying to help you sinner!". I simply replied "God loves you!". Which just made them more upset and stomp off. I've gotten more used to being witty when people pick on my disability or someone elses. Or just to simply luagh when they say something seems effective. They expect a angry response. So getting no angry responses confuses them.

Its how it works with internet trolls too.

 

[Colleen1]

Yeah invisible disabilities, that was the word. My mom has fibromyalgia and some times people will be like "Are you sure you just didn't strain a muscle?". Or if she complains about the pain enough they say shes faking it for attention.

Laughter is so important when disabled. The ones who can' laugh live in such anger in sadness. I remember one time someone brought up I wasn't praying enough and then they added "I know this makes people angry, which just means Gods convicting you because you know you need to pray harder!". While I am sure some people would have exploded my response was "Maybe Gods convicting you of not praying enough. They say those who point out things in others often do it so it makes them feel better about the fact they have the same issue!"

This persons faced cringed up and they screamed something at me along the lines of "<swear words> you! I was trying to help you sinner!". I simply replied "God loves you!". Which just made them more upset and stomp off. I've gotten more used to being witty when people pick on my disability or someone elses. Or just to simply luagh when they say something seems effective. They expect a angry response. So getting no angry responses confuses them.

Its how it works with internet trolls too.

Joni Eareckson Tada has a neat talk about invisible disabilities which I've posted on this forum a few times. I'll try to find the link. Pain isn't very understood but many. It can be very wearing and even more difficult if we feel belittled but... as you say learning to respond well is important. I'll have preplanned little quips to say to people so it can make things easier. Not always so easy to know what to say especially if one is fatigued etc.

My response to the issue of illness being equated with my spiritual life is that it takes a lot of faith etc to live through illness, pain, hardship etc. and there are many things one can't know about another person's life.

 

[Colleen1]

Here's the Joni Eareckson Tada link I was referring too:

Invisible Disabilites | Radio | Joni and Friends

 

[CounselorForChrist]

Oh yeah I love her! Me and my parents love what she talks about.

I will say though in general I think to some degree people with physical disabilities get alot more help and less hassle because it is obvious of what they have. And most assume their lives are harder.

Where as when people hear I have brain injury that my life is not as hard. I can't get a replacement part for my brain nor can I have it fixed. And because its a brain injury it really effects my life in every way. Not that it should be a contest of who has it worse.

 

[motherprayer]

(Sigh) So yea. Here's another one to add to the list, although its gonna be long because I can't figure out how to shorten it.

Last night I was on the phone with a good friend of mine. I was upset because I had a migraine and I was whining (yes lol whining) about how my husband and I never get out to do anything. She's like "Just go out to dinner or the movies. It doesn't take THAT much energy to do stuff like that. Schedule a date night."

Well, see, here's the problem. I don't always have that kind of energy in the first place. She thought I was trying to say I didn't have the energy to make it THROUGH the night, but it really is more than that. We've scheduled date nights before and had to cancel because I'm just not up to it. It wouldn't be fun for either of us if I felt bad. Wah.

Sorry, just a rant. Its like, don't tell someone what they SHOULD be able to do. You don't know what its like. How do I KNOW you don't know? Because you wouldn't be saying things like that if you DID.

Okay, rant over.

 

[Colleen1]

Oh yeah I love her! Me and my parents love what she talks about.

I will say though in general I think to some degree people with physical disabilities get alot more help and less hassle because it is obvious of what they have. And most assume their lives are harder.

Where as when people hear I have brain injury that my life is not as hard. I can't get a replacement part for my brain nor can I have it fixed. And because its a brain injury it really effects my life in every way. Not that it should be a contest of who has it worse.

Right, it's not a contest but yes there are still many misconceptions out there even in this day and age. I think that's one of the reasons why it's important to talk about the way we feel and our experiences in a safe place. It can help bring more awareness and helps us as well.

 

[Colleen1]

(Sigh) So yea. Here's another one to add to the list, although its gonna be long because I can't figure out how to shorten it.

Last night I was on the phone with a good friend of mine. I was upset because I had a migraine and I was whining (yes lol whining) about how my husband and I never get out to do anything. She's like "Just go out to dinner or the movies. It doesn't take THAT much energy to do stuff like that. Schedule a date night."

Well, see, here's the problem. I don't always have that kind of energy in the first place. She thought I was trying to say I didn't have the energy to make it THROUGH the night, but it really is more than that. We've scheduled date nights before and had to cancel because I'm just not up to it. It wouldn't be fun for either of us if I felt bad. Wah.

Sorry, just a rant. Its like, don't tell someone what they SHOULD be able to do. You don't know what its like. How do I KNOW you don't know? Because you wouldn't be saying things like that if you DID.

Okay, rant over.

Yes, only we can know to the full extent what it's like for us and what we feel and experience. Illness most certainly can affect our relationships and social life. I try to be creative and plan well and read my body well but there are some things we just can't predict. I like being around people who discuss things so that we can work on finding solutions that work. This can help otherwise both the people in my life and I can get rather frustrated. I've found that at times guilt can creep in because I can feel like I'm letting people down or having to say 'no' a lot. I try hard to balance things out but some times I have to let things slide to focus on a relationship for a bit. Hard to always know what to do.

 

[motherprayer]

Yes, only we can know to the full extent what it's like for us and what we feel and experience. Illness most certainly can affect our relationships and social life. I try to be creative and plan well and read my body well but there are some things we just can't predict. I like being around people who discuss things so that we can work on finding solutions that work. This can help otherwise both the people in my life and I can get rather frustrated. I've found that at times guilt can creep in because I can feel like I'm letting people down or having to say 'no' a lot. I try hard to balance things out but some times I have to let things slide to focus on a relationship for a bit. Hard to always know what to do.

You are such a blessing to me <3 Thank you just for being you!

 

[Colleen1]

You are such a blessing to me <3 Thank you just for being you!

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