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How to Interact with Acquaintances with Chronic Pain

How to Interact with Acquaintances with Chronic Pain | Health and Wellness | Scoop.it

Unrelated cute photo of supermodel Tristan Kemitzis

Eli Dinkelspiel's insight:

Here's a good discussion I had with @Kaitlin McKinnon:

 

Kaitlin: This article (referring to my first scoop) seems primarily directed towards people who are either good friends with, or live with a person suffering from chronic pain.

 

Do these suggestions also apply for someone with a more casual relationship with someone suffering from chronic pain? It seems like the article centers on the idea that people with chronic pain try to appear (and want to feel) "normal" (although of course that word is fraught with problems). At in your experience, is it better if a more casual acquaintance acknowledges chronic pain or, as long as they respect set boundaries, is it better to, for the most part, not comment on it? 

 

Me: It's really context dependent. You're right, though, that it's directed towards people close to the sufferer. Here are some personal suggestions for dealing with people with chronic illness:

 

a) Don't make suggestions. It's really annoying and has never been helpful. It wears down on you like you wouldn't believe.

 

b) Ask questions like, "how can I be helpful?" rather than "WHAT'S IT LIKE WHEN YOU'RE IN A LOT OF PAIN LOL CAN I TOUCH IT?"

 

c) Sympathize, don't empathize. It's impossible to know what the sufferer is going through. This is a really tricky one.

 

d) If you ask about something, REALLY MEAN THAT YOU WANT TO HEAR ABOUT IT. It's hard to reveal a part of yourself to someone, especially something so vulnerable.

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Education's comment, June 10, 2014 2:14 AM
I think this is a really interesting and important discussion, especially around Eli's tips about how to be an ally. I think it's very applicable to race-related and sexual orientation-related discussions about how to be an ally, as well. C) seems really tough, about how to sympathize but not empathize. I feel like empathizing is generally a more selfish thing to do (ie: "Oh I so know what you are feeling" and then derailing to conversation to being about you and not the other person), but how do you draw the line of when a person genuinely is trying to understand what the other person is suffering? Because that can be really healing, too.
Education's comment, June 10, 2014 11:06 AM
(That was Celeste)
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Chronic Pain

Chronic Pain | Health and Wellness | Scoop.it
reddit: the front page of the internet
Eli Dinkelspiel's insight:

This is a great resource for sufferers of chronic pain. It's a small, well moderated subreddit, where people will listen to you vent, offer help, and discuss strategies for dealing with chronic pain. Importantly, everyone there is a sufferer or is very close to one, and so it's often a much safer space than the subscriber's own community. At least, that's the case for me!

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PMC Open Meeting Review

PMC Open Meeting Review | Health and Wellness | Scoop.it
Eli Dinkelspiel's insight:

Physical Medical Conditions club had an open meeting last week, our first. It was super productive and informative: for me, and for our visitors. We talked about levels of ally-ism and the difficulties faced in becoming an active, aware ally vs. a passive ally. I learned a lot on this subject. One sentiment I heard  often was that, from an allied perspective, it can be very hard to talk about the medical condition, as it often changes day-to-day. One thing I loved to hear was the overwhelming desire to help, but feeling unable to do so.

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Kaitlin McKinnon's comment, May 15, 2014 1:12 PM
Did anyone come up with any solutions or suggests for how allies could show support/help? If the desire is there, at least in that small community, it might be time to start brainstorming ways for that to happen.
Or is education and awareness still the main goal?
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How to Understand Someone With Chronic Pain: 12 Steps

How to Understand Someone With Chronic Pain: 12 Steps | Health and Wellness | Scoop.it
How to Understand Someone With Chronic Pain. Chronic pain sufferers have attempted numerous alternative therapies and know what therapies have worked or not worked for them. Some people have been misinformed or merely misunderstand the...
Eli Dinkelspiel's insight:

A Guide to Understanding Someone With Chronic Pain

 

This is one of my favorite guides for understanding someone suffering from chronic pain. Despite being a wikihow article, it is comprehensive and very attuned to the mind of a chronic pain sufferer. In particular, it delves into the difference between "health" and "wellness." 

 

"Recognize the difference between 'happiness' and 'healthy'"


This line from the article is a perfect start to this topic. Being happy and being healthy are two different realms. Raising awareness of this fact would be a major victory for disability awareness.

 

"Leave your 'pep talk' for your kids and your gym buddies."


More on this later in the year, but this is a major issue people with disabilities face. Pep talks are the bane of my (and others') existence. Leave them at the gym.

 

"Be helpful"

 

Believe it or not, at this point in disability activism, this goal is still a pipe dream. We're still working on simple awareness – proactive action is far away.

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Kaitlin McKinnon's comment, April 4, 2014 2:56 PM
This article seems primarily directed towards people who are either good friends with, or live with a person suffering from chronic pain. <br> <br>Do these suggestions also apply for someone with a more casual relationship with someone suffering from chronic pain? It seems like the article centers on the idea that people with chronic pain try to appear (and want to feel) "normal" (although of course that word is fraught with problems). At in your experience, is it better if a more casual acquaintance acknowledges chronic pain or, as long as they respect set boundaries, is it better to, for the most part, not comment on it? <br>
Eli Dinkelspiel's comment, June 4, 2014 2:17 PM
@Kaitlin McKinnon it's really context dependent. You're right, though, that it's directed towards people close to the sufferer. Here are some personal suggestions for dealing with people with chronic illness:
Eli Dinkelspiel's comment, June 4, 2014 2:19 PM
@Kaitlin McKinnon

a) Don't make suggestions. It's really annoying and has never been helpful.

b) Ask questions like, "how can I be helpful?" rather than "WHAT'S IT LIKE WHEN YOU'RE IN A LOT OF PAIN LOL CAN I TOUCH IT?"

c) Sympathize, don't empathize. It's impossible to know what the sufferer is going through.

d) Give sufferer 20 dollars
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"Just"

"Just" | Health and Wellness | Scoop.it
Eli Dinkelspiel's insight:

"Just" is one of the worst words in the dictionary. Just go to sleep. Just go home and get better. Just stop thinking about it. Just suck it up. Just avoid people in the hallways. Just don't go out on the weekends. Just stop doing that thing you live. Just completely change your life.

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Kaitlin McKinnon's comment, June 5, 2014 8:30 PM
I've seen this picture before as a representation of insomnia, but I think you make a really good point in applying it to other medical conditions, especially invisible ones. People think they have an easy solution "Have you tried not being sad?" but they often don't realize that it's not that simple. Chances are, if they can think of a 'solution' the sufferer has already tried it and it either didn't work or doesn't always work. I think this comes back to what you told me, Eli, not to make suggestions.
If someone asks for help, I'm sure that's fine, and I'd do whatever I could to help, but outside of that, the best thing to do is just be a support system. I think the hardest thing (at least for me) to remember when I'm talking to someone with an invisible condition (in my experience, depression) is that helping the person is not about me and my ability to help them, it's about them, and their comfort. It's a fine line, but an important one. The ally does not belong in the spotlight.
Displacement Project's comment, June 6, 2014 3:47 PM
I totally agree with both of you. I don't actually have the experiences that you both have had that fuel your feelings against that mindset in others, but I can certainly empathize and see it from your point of you. Besides the fact that it comes from a good place (they are TRYING to help), I can see how it would not really help at all. Also, there is a sense that the ally is treating you like you're stupid, as if they are more likely to think of a solution than you. I think people are confused when it comes to invisible conditions, especially those that affect very basic behaviors.
Eli, I admit I had to check myself the other day in Shakespeare class when you said you needed to look at your computer during class because of something to do with your back. My first reaction was like "what does that have to do with his back?" but I had to tell myself "he knows his condition better than I do. I don't know anything about what might or might not help him"
-Joe
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Telepsychiatry Brings Emergency Mental Health Care To Rural Areas

Telepsychiatry Brings Emergency Mental Health Care To Rural Areas | Health and Wellness | Scoop.it
Many North Carolina counties have no psychiatrists, so emergency rooms are experimenting with beaming in the doctor on video. The hospital can then provide needed treatment.
Eli Dinkelspiel's insight:

While my specialty is in invisible "physical" conditions, mental conditions can, and often are, just as debilitating and harmful as physical problems. In fact, one of the main issues faced by people struggling with mental illness is the false perception that these *aren't* physical problems, too. When something's wrong with the mind, it's almost always due to a neurochemical difference in the brain. 

 

Experimenting with video chat technology is a good way to bring the much needed specialized care to places that don't have it. I applaud North Carolina by using this cost-effective and forward-thinking to help solve a serious problem.

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Cassie May's comment, June 11, 2014 9:53 PM
Very interesting. Connects to my scoops about how technology is allowing both physical and mental help to reach further than it ever could before. Also the speed in which someone with a mental problem can be contacted is extremely important and can sometime save lives. Being able to reach people in different countries also allows for advanced techniques to be shared around the world and allow for developed care.
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My Guiding Question

My Guiding Question | Health and Wellness | Scoop.it
Eli Dinkelspiel's insight:

How can we affect social change so that the public is sensitive and aware of problems faced by a tiny, mostly invisible part of society (namely, people with disabilities)?

 

Sub-question: Is this even possible?

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