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What NOT to say to people who are crhonically ill / disabled
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englishmuffin
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In the early days of my ME--many years ago now--my friend ALWAYS asked me if I was going to be in school the next day, and I always told her I didn't know.
Apart from that, for me it's not been so much what people say, but just the pure frustration of having an invisible and unpredictable illness. The sceptical benefits system. The university that refused to co-operate for two and a half years. Going back a few years, whoever decided to call the social services on my parents.
A friend of mine, who has a blue badge (apparently I'm not disabled enough to qualify) was once asked by a bus driver what was wrong with her.
Apart from that, for me it's not been so much what people say, but just the pure frustration of having an invisible and unpredictable illness. The sceptical benefits system. The university that refused to co-operate for two and a half years. Going back a few years, whoever decided to call the social services on my parents.
A friend of mine, who has a blue badge (apparently I'm not disabled enough to qualify) was once asked by a bus driver what was wrong with her.
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Yes, we can be questioned about a lot and it can be exhausting. I'm glad you posted. I can relate to some of what you say. it can be frustrating. The illness can be so unpredictable and frustrating. I had vertigo hit this summer in spurts and that is an example of some of the randomness of it and...well...ick. Yes, benefits can be a tough nut to crack. I hear ya. I even hear ya when it comes to disability 'friendly' services such as the blue badge / bus etc. I'm thankful you've shared... makes us feel not so alone.
I keep telling myself, I know and I know what it is so don't let what others do and say get you down but it's hard. I hope one day others / medical profession and services etc with wise up to our needs and show us a little more understanding and respect.... being patronized isn't fun. Thanks for posting.
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Mariposa36
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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.
This looks like a great list.
CFS/ME is a terrible chronic disease that is real, and I can't stand the deniers. I don't have it and don't know anyone that does (besides you and people I've heard of in documentaries), but evidence is clear that these people aren't faking it. Heck, there's even been little kids born with it that displayed symptoms far before they were even aware of it. I wouldn't take a doctor seriously that denies ME's existence as a real disease.
Best wishes for comfort and better treatments. <3
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I hear ya. Thanks, yes some attitudes can be rather amazing. There are some good studies being done and such so this is good but it takes time for the information to be absorbed by the government, insurance companies and other agencies. Glad things seem to be moving in a more positive direction now though...for the most part.
Thanks
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Canadian government has done a bit better than some but it takes a while for studies to be validated and written into policy and there is stuff that is still unknown so it's hard to enforce things. Plus advocacy is always needed and considering the varying views even if one recognizes the physical aspect to these illnesses, some studies base their premiss that it's neurologically based, endocrine based, etc etc so it can be tricky. However, minimum, patients should be treated with the same respect afforded other patients with other illnesses.
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Oh my...almost crying when I read this, you are not alone!!! Recently diagnosed with CFS/Fibro and major depression. Like saying to someobe w a broken leg- "why don't you just get up what's wrong with you?!" Looking forward to great chats here!
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englishmuffin
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Hiya, welcome!
I had a weird experience the other day; I was lining up outside the disabled entrance in a convention and there was a security guard there trying to shoo away all the non-disabled people who were confused (or too lazy to walk to the other entrance). I'd rarely had my condition questioned face-to-face, but I'd heard so many stories I went on the defensive and the poor guy was rather taken aback. I felt a bit guilty afterwards when I remembered I'd got a disabled pass in my bag, which I could have just shown instead, but that's brain fog for you.
I had a weird experience the other day; I was lining up outside the disabled entrance in a convention and there was a security guard there trying to shoo away all the non-disabled people who were confused (or too lazy to walk to the other entrance). I'd rarely had my condition questioned face-to-face, but I'd heard so many stories I went on the defensive and the poor guy was rather taken aback. I felt a bit guilty afterwards when I remembered I'd got a disabled pass in my bag, which I could have just shown instead, but that's brain fog for you.
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Boy oh boy do I ever hear ya!
You're not alone in this. It's so hard to deal with the illness on top of which we can have shame etc heaped on our heads and have to deal with so many misunderstandings and negative attitudes. Glad you found our little nook. ttyl ...blessings
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Wow, thanks for sharing. I too get frustrated at times and it can be difficult to know what to do in the present moment. I think it's good that we do share what's on our minds and that we expect respect. I hope you hang in there. Some days can be rather trying.
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Well, lately I've been bothered by this sort of dismissive smirk that some can use when you try to explain things. In my situation it was with a healthcare professional. It can really make me feel uncomfortable. ...invalidating
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Saying in a rushed annoyed way... "I understand I understand...so why are you in pain today?"
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I know this thread is several years old, but I wanted to respond. I am bummed that I didn't see this thread earlier.
Like all you fine folks, I have disabilities. But mine come from being born very early: fatigue, learning disabilities-difficult with math, multi-tasking etc. This day and age, medical care has improved vastly to the point where very premature babies do well. Back in 89, when I was born, medical care wasn't what it is today.
The thing that affects me most is fatigue. Due to that I can't work a full time job and am on SSI. I won't be able to care for a house, pay a mortgage, or pay bills, etc. I'll live in a place that helps people with disabilities (which I don't really mind, because I'd be independent with having my own place) but still get the support I need.
Like many of you, I don't look like I have a disability. I've gotten many of the same responses you have.
"You're always tired." (from a friend)
"You don't need SSI." (from Dad and stepmom)
"Everyone else can follow directions, why can't you?" (from a horrible teacher.)
"If you had more faith and prayed for God to heal you, you wouldn't need to be on disability benefits!"
Oh, and I was hardly able to get benefits in my state. Had it not been for a diagnosis of mild cerebral palsy, I wouldn't have gotten the benefits I need to stay alive.
Oh, and seeing your Mom burst into tears arguing with people whose job it is to help people with disabilities about why your child needs services is just great. Smh.
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Thanks for letting me vent.
Like all you fine folks, I have disabilities. But mine come from being born very early: fatigue, learning disabilities-difficult with math, multi-tasking etc. This day and age, medical care has improved vastly to the point where very premature babies do well. Back in 89, when I was born, medical care wasn't what it is today.
The thing that affects me most is fatigue. Due to that I can't work a full time job and am on SSI. I won't be able to care for a house, pay a mortgage, or pay bills, etc. I'll live in a place that helps people with disabilities (which I don't really mind, because I'd be independent with having my own place) but still get the support I need.
Like many of you, I don't look like I have a disability. I've gotten many of the same responses you have.
"You're always tired." (from a friend)
"You don't need SSI." (from Dad and stepmom)
"Everyone else can follow directions, why can't you?" (from a horrible teacher.)
"If you had more faith and prayed for God to heal you, you wouldn't need to be on disability benefits!"
Oh, and I was hardly able to get benefits in my state. Had it not been for a diagnosis of mild cerebral palsy, I wouldn't have gotten the benefits I need to stay alive.
Oh, and seeing your Mom burst into tears arguing with people whose job it is to help people with disabilities about why your child needs services is just great. Smh.
-_____-
Thanks for letting me vent.
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Yes!
I hate when people are like that to me. Please don't tell what I should be able to do, question why I can't do something that other people can do.
I am not other people. I am me.
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Lovesonsofthundet
Active Member
You're not praying enough'
Get over you
Stop with the attitude
You gotta be home by 4 or 4:30 because people take avange (SP?) of you
Stop acting like that
Why are you acting that way?
You have no reason to be depressed
If you was truely a christian you wouldn't be acting like this
This is what men do to women
People are going through more than you
etc, etc, etc
Get over you
Stop with the attitude
You gotta be home by 4 or 4:30 because people take avange (SP?) of you
Stop acting like that
Why are you acting that way?
You have no reason to be depressed
If you was truely a christian you wouldn't be acting like this
This is what men do to women
People are going through more than you
etc, etc, etc
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frank1234
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I have had chronic health issues for years(of course i have been treating them holistically), but honesty the majority of my experiences have been very negative among my own church groups, relatives, and friends. They simply don't understand, and do more judging than anything else. You are forced to not even confide in any body, because they just drain your energy. I had an extremely bad encounter from a brother whom i used to know, who is a missionary in Thailand. I nearly had to go to hospital because of his words and his judgemental attitude. I Never want to talk to him again. Who needs that? People(even Christians) simply don't understand Christians with chronic health problems. That's very sad!!!!!
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