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

[Colleen1]

I have various illness I deal with on a daily / minute to minute basis. None of which are fun. The main things I'm diagnosed with are Chronic Fatigue Syndrome, Chronic Myofascial Pain and Fibromyalgia. All of these are fairly misunderstood and there are misnomers we are constantly faced with. There aren't a whole lot of places where we can come together and discuss some of these issues or frustrations so I've decided to create a place here. You're welcome to share and discuss and enjoy meeting with people who understand. Take care of yourselves and you're in my prayers.

*PLEASE NOTE THIS IS NOT A THREAD THAT WAS STARTED TO JUDGE THE FEELINGS / EXPRESSIONS / STATEMENTS OF THE CHRONICALLY ILL AND TO DEBATE SAID EXPRESSION. RATHER, IT WAS STARTED FOR THE PURPOSE OF PROVIDING A SAFE PLACE FOR THE CHRONICALLY ILL TO COME AND EXPRESS THEMSELVES AND THEIR FRUSTRATIONS.

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[Colleen1]

Today was one of those difficult days when I was out doing (trying to do) errands. Let's just say it wasn't fun. Every now and then I'm faced with certain questions, stares, comments, etc. I came home today and ... let's just say needed an ear to vent to... actually, truthfully, I needed a shoulder to cry on. Although these things are frustrating and can make me grouchy, let's face it, it's really because they're hurtful. I know that people can't truly understand unless they've experienced what we're going through but all the same this can leave one bewildered. Okay, I get it; I'm feeling vulnerable right now and it's been a long day and I'm in terrible pain. e.g. I closed the window when I came home and it felt like my wrist was busting apart. ...and yes it hurts to type but yeah, it also feels great to be getting this off my chest. So here we go. I'll start the thread by saying one thing you should never say to someone who is chronically ill / disabled is:

-"Other people manage why can't you?"
- pick up their cane from their shopping cart and say, "you don't need this".
- Chronic Fatigue isn't really an illness.
- Chronic Fatigue is caused by depression.
- If you eat Goji berries you'll be cured.
- Pray harder; you lack faith.
- Here's a religious formula to follow and you'll be healed.
- You don't look sick.
- What 'really' is wrong with you.
- " 'my' doctor said Chronic Fatigue is..." 'everything it's not'
- somebody else with a disability does this; why can't you?
- roll your eyes when someone takes out their collapsible cane from their bag.

p.s. those of us who suffer know there are many more comments we've dealt with; you're welcome to bare your heart. take care.

 

[Colleen1]

Thanks for listening.

Have a great day!

 

[desmalia]

How about when you tell someone about your illness and they immediately must share all the horror stories their friends/relatives have suffered from the same thing. SO uplifting, right? lol

 

[Colleen1]

How about when you tell someone about your illness and they immediately must share all the horror stories their friends/relatives have suffered from the same thing. SO uplifting, right? lol

Yes, this can be overwhelming.

 

[desmalia]

Yes. And while I know they mean well it's not helpful at all.

 

[Colleen1]

Yes. And while I know they mean well it's not helpful at all.

No, not if we're trying to get our minds off the stress and worry of the situation. Hard to focus on things we need to with the lack of energy that comes with being chronically ill apart from the negativity of others. But then I get people who say it will all go away if only you ..... and this just isn't the case. If I ignore a dog will it disappear from exsistence.

 

[Colleen1]

Another interesting comment I've heard lately is:

"You're unmotivated"

Believe me, anyone who knows me knows I'm not an unmotivated person. Never the less some people seem to see fatigue as unmotivation. This isn't the case. Discouraging 'yes', unmotivated 'no'.

 

[desmalia]

Ha, yep, been there. Or "you're lazy". People who aren't so tired most days that it physically hurts don't understand and can't understand.

 

[Colleen1]

Ha, yep, been there. Or "you're lazy". People who aren't so tired most days that it physically hurts don't understand and can't understand.

I hear ya!

 

[Fenny the Fox]

I have different medical conditions than you, but I totally get what you mean. People tend to say the wrong thing when they hear you have health issues, regardless of what they are. And are all too happy to share what they "know" about it, even when they clearly know very little about it at all...

By the way, I am in love with your avatar. I adore Chip and Dale!

 

[Colleen1]

I have different medical conditions than you, but I totally get what you mean. People tend to say the wrong thing when they hear you have health issues, regardless of what they are. And are all too happy to share what they "know" about it, even when they clearly know very little about it at all...

By the way, I am in love with your avatar. I adore Chip and Dale!

Hi, thanks for stopping by and posing this message. I enjoyed the reminder that I'm not alone. I so agree with what you've said here....so very true. At times we can get tons of unsolicited advice that is nonsensical that we didn't ask for and don't need. Thanks for posting and the nice comment about my avatar. Take care.

 

[bbbbbbb]

I could write a book about the stupid things people have said to me. One of the worst came a month after my diagnosis when a friend asked me if I was better now. With fibromyalgia you never look or sound "sick" so people are always thinking you are perfectly healthy. I told him that, yes, I was better - better than Adolph Hitler, but there were some days I wasn't even sure of that. That left him dumfounded.

One other problem comes when people ask me how I am. If I am honest with them, then I really bum them out. My best response is to tell them I am better than I deserve (which is true).

 

[Colleen1]

I could write a book about the stupid things people have said to me. One of the worst came a month after my diagnosis when a friend asked me if I was better now. With fibromyalgia you never look or sound "sick" so people are always thinking you are perfectly healthy. I told him that, yes, I was better - better than Adolph Hitler, but there were some days I wasn't even sure of that. That left him dumfounded.

One other problem comes when people ask me how I am. If I am honest with them, then I really bum them out. My best response is to tell them I am better than I deserve (which is true).

I understand what you are saying. I can get pretty bad with all 3 illnesses so some days it is rather obvious I'm fairly ill. But yes, many times it's like an invisible illness and people just don't understand. I like you could right a book about all the insensitive, rude down right arrogant intrusive things that I've been told and that have happened to me. Things have gotten a bit better because I've been fairly assertive in some cases but yeah...

As well, I usually say fine especially with people who aren't genuinely caring or aware. If I say tired it usually means I'm down right exhausted cause I'm always tired and in pain. Hang in there, I know how you feel...and I say this because I truly do know how you feel.

 

[desmalia]

I usually respond with "fine" too, particularly when it's people who don't know my diagnosis. At 37, I still get the "you're far too young to have anything wrong with you" comments, particularly because I work with a lot of seniors. Sometimes it's easier not to "go there". My bosses have gotten pretty good at figuring out when I'm really dragging my butt, though. One look at my face, and they figure it out. They're very supportive and offer me time off whenever I need it. They're such a blessing.

When I do have to discuss my illness with people, I try to keep the conversation as positive as possible. I truly am much better off than many with my disease. I don't need a wheelchair, and I can even workout still. And as new medical science comes available, sometimes the drug companies can't squash it down, and people can really find improvement, or maybe one day even a cure.

 

[Colleen1]

I usually respond with "fine" too, particularly when it's people who don't know my diagnosis. At 37, I still get the "you're far too young to have anything wrong with you" comments, particularly because I work with a lot of seniors. Sometimes it's easier not to "go there". My bosses have gotten pretty good at figuring out when I'm really dragging my butt, though. One look at my face, and they figure it out. They're very supportive and offer me time off whenever I need it. They're such a blessing.

When I do have to discuss my illness with people, I try to keep the conversation as positive as possible. I truly am much better off than many with my disease. I don't need a wheelchair, and I can even workout still. And as new medical science comes available, sometimes the drug companies can't squash it down, and people can really find improvement, or maybe one day even a cure.

It's nice to have supportive people in your life. I'm a bit short on that unfortunately but I'm managing ok I guess. Does make it easier though. I'm happy you are able to manage. Yes, there is more and more information coming out and this is good but further studies need to be completed to really get to the bottom of things. I have lots of problems with medications so alternative treatment like massage and food, supplements, physio. etc are like my meds. Well, I do take a few meds but for other of the symptoms like stomach and allergies. Oh well, i guess it comes in God's good time but yes, it can be rather tough all the same. God bless!

 

[Victorium]

I hate it when people tell me: "Be positive and push yourself". You learn to draw on your inner strength and believe in yourself, but I guess it still gets me down some days the things people say or expect of me.

God bless you Colleen.

 

[desmalia]

It's nice to have supportive people in your life. I'm a bit short on that unfortunately but I'm managing ok I guess. Does make it easier though. I'm happy you are able to manage. Yes, there is more and more information coming out and this is good but further studies need to be completed to really get to the bottom of things. I have lots of problems with medications so alternative treatment like massage and food, supplements, physio. etc are like my meds. Well, I do take a few meds but for other of the symptoms like stomach and allergies. Oh well, i guess it comes in God's good time but yes, it can be rather tough all the same. God bless!

I have lots of problems with medications as well, so the more natural route is definitely the better option for me too. My specialist is supportive of avoiding the drugs for as long as possible, but not up on any of the other kinds of treatments like diet, vitamins, etc. etc. So I'm on my own to navigate. And our medical benefits don't cover alternate treatments, so it gets pretty expensive. But we do what we can and depend on the Lord to provide according to His will. I have confidence that He will be glorified whether it be in healing or in my weakness.

I hate it when people tell me: "Be positive and push yourself". You learn to draw on your inner strength and believe in yourself, but I guess it still gets me down some days the things people say or expect of me.

God bless you Colleen.

Yes, that's a bad one. I think people often say that because they're feeling awkward and don't know what else to say. They probably mean well, but that doesn't help you any.

There is a point where each of us has to say "I'm not going to let this disease define me". But no one else can tell you to do that. And frankly, I don't put much stock in inner strength. I am weak, but the Lord is strong. I'd rather depend on Him than me. And I'd definitely rather believe in Him than in me!

 

[Colleen1]

I hate it when people tell me: "Be positive and push yourself". You learn to draw on your inner strength and believe in yourself, but I guess it still gets me down some days the things people say or expect of me.

God bless you Colleen.

Thank you; I'm glad to help. Yes, I understand. It is like they are indirectly saying we aren't motivated enough or lazy or not wanting to get better or that we don't have enough faith etc. This can be difficult to hear. I have also been literally told some of these things...directly. This shows a real unawareness of the illnesses we have and a real unawareness of who I am and my personality type. It can be rather discouraging. I think we need to keep in mind the amount of faith, perserverance and awareness it takes for us to live with chronic illness. God knows this; He knows our heart. If some people understood the amount of faith it took to be faithful during these times, times our entire body is in pain all day long for years with very little we can do, attitudes would change. I just wanted you to know you aren't alone. There are people who understand.

 

[Colleen1]

I have lots of problems with medications as well, so the more natural route is definitely the better option for me too. My specialist is supportive of avoiding the drugs for as long as possible, but not up on any of the other kinds of treatments like diet, vitamins, etc. etc. So I'm on my own to navigate. And our medical benefits don't cover alternate treatments, so it gets pretty expensive. But we do what we can and depend on the Lord to provide according to His will. I have confidence that He will be glorified whether it be in healing or in my weakness.

Yes, this is very difficult. There are many things we need to learn for ourselves. We need to be 'Jacks of all trades' to care for ourselves. It would be wonderful if opinions / policies and funding would change. This is something I'm trying to shine light on. There are some people in health services who do understand but it takes a long time to change policy and have disability agencies / insurance companies take these treatments seriously. Now with the economy problems etc, unfortunately these issues don't seen to be high on the list of priorities for politicians etc. This is unfortunate for all of us because here we are spending lots of money toward treatments that are much less effective or doing more harm in the long run. I can only speak about this in regards to where I'm from but I do here people from other provinces / countries expressing the same frustrations.