Toni Bernhard - How to Respond to Unkind Remarks When You’re Chronically Ill

Cheshire

Cheshire

Senior Member (Voting Rights)
I recently wrote a piece on comments that would be welcomed by the chronically ill (click here to read it). In this new piece, I’ll address how to respond skillfully to remarks that are unwelcomed. I’ll use two examples, both of which are comments that have been made to me and that others have told me have been made to them, often multiple times.
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https://www.psychologytoday.com/blo...nd-unkind-remarks-when-you-re-chronically-ill

Edit: if this link doesn't work, try this one: https://www.psychologytoday.com/blog/turning-straw-gold
 
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Graham said:
Temporary downtime on your server: so I'll have some temporary downtime and come back later!
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I didn't know I was running a server - oops.

The link however, seems to work fine, at least when queried using chrome.
 
I am, @Wonko , a mere mortal when it comes to the mysteries of modern technology. I was there when we strung out pebbles outside the cave to send a message in binary to friends from the other side of the valley. I was there when computers made of valves came in and solved the problem of cold offices. I was there when a Hercules flight simulator moved a camera across a model runway. So when the message says to me:
Service Unavailable
The server is temporarily unable to service your request due to maintenance downtime or capacity problems. Please try again later.

All I can do is report what I see, whether I use Firefox, Chrome or semaphore (is binary semifour?)
I bow to your superior knowledge, wisdom and wit, and await clarification, please nicely.
 
Nice list (in the link labelled 'here'). I'd love it if more people used them.

Except 8, 11, and 12. They're not awful but I'm just tired of, and therefore over sensitive to, any implication that I should be getting better soon or doing more. I say that to myself too much already so hearing it from others risks making me harder on myself again.

Would have been nice to see it here to discuss rather than just purely promoting a link.
 
No-one escapes my house, not even delivery people, without at least one ME awareness leaflet for the general public (larger print, bold and boxes) plus a copy of Laura Chamberlain's comic strip illustrating PEM, downloadable from
www.mechat.co.uk/db/tips.htm

I tell them briefly it is because of the kids in darkened rooms, or young people housebound 20/30 yrs ago still at home after decades and ask them to put in libraries, waiting rooms, churches, work noticeboards etc. Surprising how helpful they can be and have taken one for other half too.
 
Forestvon said:
No-one escapes my house, not even delivery people, without at least one ME awareness leaflet for the general public (larger print, bold and boxes) plus a copy of Laura Chamberlain's comic strip illustrating PEM, downloadable from
www.mechat.co.uk/db/tips.htm

I tell them briefly it is because of the kids in darkened rooms, or young people housebound 20/30 yrs ago still at home after decades and ask them to put in libraries, waiting rooms, churches, work noticeboards etc. Surprising how helpful they can be and have taken one for other half too.
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I'm so glad to hear it!

I need to get the nerve up to do this. I'm one step closer now.
To be honest, I'm afraid of telling anyone about ME in relation to me. I tend to say very little about what's happening to me and find it easier. I thought the Maddie cartoon would be great when I first saw it (and still do) intending to show everyone. But that was before I got some of the reactions I have from the people closest (neighbours and friends) to me. I thought the Maddie cartoon would explain ...but what they want is proof, not of ME itself applied to some hypothetical other person but, applied to me. Sure, someone else has some obscure, horrible disease but you look fine...
I think I'm afraid that I'll have to parade my symptoms for them to judge when I'm at my most vulnerable. I don't do that. I'm not that person.

But maybe I'll get the nerve to share the information and talk about the people who are worse off than me. The ones who never get to leave home even for a few hours.
 
Little Bluestem said:
I think copying the article here might be a copyright violation.
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It would indeed be a copyright violation but even if it wasn't, it's generally considered good internet etiquette to drive traffic to the site where a good article appears so that the writer is rewarded for that content. If Psych Today's editors see that Toni's article is getting lots of hits, they'll keep on getting her to write more.

Win-win! :)
 
arewenearlythereyet said:
I can put this more simply

1. If they are worth bothering with try and explain once

2. If they are arseholes don't bother, ignore their comment and move on

3. If you are not up to it don't bother explaining yourself to anyone
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Yes.

If its someone worth explaining to I will usually try to explain more than once, though on separate occasions. After a few times though its not my problem, its theirs. With doctors I briefly mention one or two research findings, and wait until the next appointment to mention one or two more.

I operate from the perspective that most people do not have a clue. However we have to triage our energy, its not always worth even a token effort.

I also realise that many who kind of get it do not really get it. They say they do. Then they say something incongruous. I usually take that as a partial win ... its really hard for many to really understand unless they have either personally experienced things, or have a lot of close personal experience.

The way I see it, we, as new patients, often have trouble wrapping our heads around this stuff. If we cannot easily do it then I do not expect others to easily understand the issues. We learn over time. They do not usually have that experience. The exception is carers of patients who often learn over time.
 
alex3619 said:
I also realise that many who kind of get it do not really get it. They say they do. Then they say something incongruous.
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Unfortunately, I have this problem with my doctor of several years. She claims to take CFS seriously and has been willing to prescribe some appropriate things. Then every so often she says or does something really off-the-wall. Most recently, she prescribed injectable B12 at 1 mg/month! :emoji_astonished: :banghead:
 
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