Up Front: Something Chronic
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No CFS in the genealogical line that I know, but lots of allergies. I wonder if that's linked?
If it is immune system linked then there will certainly be a genetic component. But the genetics of the immune system is far from straightforward so it won't be a simple relationship.
I'm not sure we're in that much of a vacuum though.
Cool fact sheet Russell, and yeah I guess it really is a disease that affects women more than men, hmmm now why could that be? So many of the points on this thread are listed clearly. Except for the care and support that PAS contributors share for each other.
And sorry for the post spam there were just a bunch of things I wanted to comment on - especially the food - hungry now.
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Dyan, I appreciate that you're trying to be helpful, and of course I agree that meditation and any other techniques which soothe and calm and relax are great. I practice tai chi myself, and find it enormously helpful for my general ability to cope.
But upthread it did really sound like you were saying that mindfulness/meditation was curative, and hence the kneejerk reaction from many of us.
After you've heard x number of random acquaintances/complete strangers suggest positive thinking/exercise/anti-depressants/patent remedy/exorcism/drinking own urine*, your patience for receiving advice gets pretty short.
But I totally endorse any technique that makes you better able to cope. And (as I think I mentioned upthread) I got a lot of benefit from seeing a counsellor to help me deal with the emotional aspects of being chronically ill. It doesn't change my condition, but it helps me feel OK about myself and manage my life better around that condition.
anything you do, be it watching soap operas or yoga or driving fast cars or wallowing in misery or whatever, anything you do that makes you feel better is good
:-) Well put, Bart!
*these are actual examples, BTW! -
After you've heard x number of random acquaintances/complete strangers suggest positive thinking/exercise/anti-depressants/patent remedy/exorcism/drinking own urine*, your patience for receiving advice gets pretty short.
My patience only gets short when they won't just leave it at that if you decide not to try it, and go on about it every time you see them. I seriously stop talking to people who do that. I don't have CFS, but another chronic lifelong 'disorder'.
I think what a lot of people don't get is that often you're not telling people about your illness so you can get advice. You're telling them so they can understand how you are. Just telling people helps with some illnesses, especially when there is a psychosomatic component.
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This advice-giving has been bothering me i.e. well-intentioned, kindly-meant advice. I'm sure that the people offering advice here have only been trying to help, but even so, I think it's not a good response.
The thing is, people who have a chronic condition are most likely experts in the condition and how it affects them already. And they are certainly experts in themselves. They've got PhDs in that. So coming along and offering advice is patronising at best.
Here's an analogy. When I was about 7.5 months pregnant with my twins, we went along to visit the hospital midwife, who took us through the delivery suites and so on. She expressed some concern that I was still working, and then asked what I did to relax. "Oh,usually reading," I said. She said, "You need to really relax. You need to just sit and let the clouds float by and let your mind drift and then you'll relax."
"That's not me," I said politely, but on the inside I was seething, and I only just prevented myself from saying something very rude indeed. She had no f-ing idea about me, or the sort of person I am. She had only just met me, and yet she presumed to tell me how I ought to go about relaxing.
Someone else likes meditation / yoga / lying under a tree staring at the pattern made by the leaves? Lovely. Fantastic. That's great. For you. As for me, bring me a bucket. It really, really doesn't suit me. And I know this because I am the expert in me. And I seriously mind a lot if you try to suggest that I should do it. For goodness sake, I am an adult woman in my forties and I can be expected to know what works for me.
People who have CFS and other chronic conditions or illnesses can be expected to already know what works for them and what doesn't. The correct response to finding out that someone has a chronic condition is not, "Have you tried x?" but something like, "What have you found works for you?" or "Heavens - that must have a huge impact on you." Something that creates a space for that person to pursue the conversation if they want to.
Short version. Don't offer advice. Not even if you mean well. Just don't do it. Especially if you have never had to cope with the condition yourself.
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I've been thinking about positive thinking. If it's a hard won thing after a process of information seeking and grieving, then, yes, it's good. I was a great fan of Stephen Ray Gould's elegant essay, "The median isn't the message".
http://www.cancerguide.org/median_not_msg.html.It helps when a patient can take positive action.
In my search for the works of David Spiegel (used to believe in positive thinking etc) I found the below
http://www.pulitzer.org/archives/6853
Indeed, if someone is a natural curmudgeon, then continuing to be a curmudgeon may be the very thing to help lower stress, bolster the immune system and, possibly, influence the success of the cancer treatment.
"Many pessimists cope well with cancer," says Jimmie Holland, the chair of psychiatric oncology at Memorial Sloan-Kettering Hospital in New York. "You can be as curmudgeonly or angry or whiny as you want and still survive cancer, as long as it doesn't cause your doctor to throw you out of the office."
Just goes to show. I'm the biggest pessimist out ...
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Don't offer advice. Not even if you mean well. Just don't do it. Especially if you have never had to cope with the condition yourself.
You have no idea how much stress it causes me to follow that advice :). I think I'm genetically programmed to advise :). Just slap me and I usually remember to stop.
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Yeah, sorry, I'm with Deborah. All advice is well-intentioned. How you feel about giving it actually isn't the point. If you really want to be helpful, genuinely, then you should be thinking about how you're making the recipient of the advice feel.
(Yes, I recognise the irony in giving advice about how to give unwanted advice.)
Basically:
- do you feel you know more, or something different, than this person knows about their own condition, given to you it's 'interesting' and to them it's their life?
- do you know more, or something different, about this condition than their medical professionals do?
- do they appear to be comfortable talking about this, or are they finding it awkward or embarassing?
- and, most importantly, have they asked for advice?
That doesn't mean that there isn't constructive advice. Knowing a sympathetic doctor, for instance.
But also... look, every time you try a pet therapy and it fails, it's like another nail in the coffin. Every time Graduated Exercise Therapy didn't work, I blamed myself. Because it was supposed to, so it must be me fucking up. Not being strong enough. Finding out that it actually DOESN'T work for chronic fatigue was huge. One of the women who emailed me had had all her mercury amalgam fillings removed. Expensive, painful, bothersome, and totally ineffective.
And you know? If you want to help? I have Chronic Fatigue Syndrome. Come weed my garden. Fold my laundry. Take my kids out for the day. Suggest something concrete you think you could do to actually HELP.
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Just goes to show. I'm the biggest pessimist out ...
Forget about the lambs' shanks. (I was up at 12 and 4 feeding a lamb, dammit)
It's time for a Pessimism Show-Down! :) (I don't think the lamb is gonna make it) -
Short version. Don't offer advice. Not even if you mean well. Just don't do it.
Er... my partner suffered from very debilitating OOS. She had seen all manners of physiotherapists until a friend suggested she try this particular osteopath she was seeing, and she did and boy did that help. So it's not as simple as "don't offer advice" I would suggest.
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Yeah, the friend who suggested acupuncture, that completely fixed what had been a long and frustrating neck injury, has my undying gratitude.
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Er... my partner suffered from very debilitating OOS. She had seen all manners of physiotherapists until a friend suggested she try this particular osteopath she was seeing, and she did and boy did that help. So it's not as simple as "don't offer advice" I would suggest.
I agree. You can acknowledge someone as having a PhD in themselves, hear their story and still be able to respectfully say: "There's some evidence that X helps, but you may have tried that," or "X worked for me, but your mileage may vary." It doesn't have to come in lecture format.
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I've noticed that some people only give advice to shut other people up about their problems. It does work.
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So it's not as simple as "don't offer advice" I would suggest.
In a one on one situation, where someone says 'god my OOS is killing me, and I've tried everything and nothing does a damn thing!' Isn't that pretty much an opening for 'I've got this amazing Osteopath, who worked for me.' The freedom to trust the person who made the recommendation or not is there. Presumably they didn't say 'you've been wasting your time, and only my Osteopath will make any difference'.
If someone is sharing experiences of chronic illness as a means of stimulating empathetic dialogue (I've started researching this, it's fascinating) or just cause sometimes the shittiness is too much for one person to carry, then it is not quite the same as giving tacit consent for lumping advice on them, is it?
And what RB said.
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Yes, okay, I'll revise that "Don't give advice" advice a little. I think that recordari (and others) make a good distinction between one-on-one advice, and stranger-advice. If it's someone with whom you already have a friendship, then saying, "I know a doctor who is sympathetic to CFS - would you like me to give you her name" seems to me to be okay, especially because it leaves it wide open for the person to say, "Yes!", or "No, I've already got a great doctor." Saying, "You should try acupuncture/meditation/exercise/vitamin c/lying under a tree and looking at the leaves" to a person you've just met is just plain rude.
In between, which would include internet forums, I think erring on the side of not giving advice is the better thing to do.
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I think as in most things it can be boiled down to "try not to be a dick". (Updating Saint Augustine - but only slightly.)
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Saying, "You should try ...
So is there a difference between saying "you should try..." and asking "Have you tried ...?"
I know I'm trying to justify my need (see there I admit it) to advise. But also part of it is my innate/inept curiosity. One of the things I like about this thread is that it's really clear from the CFS patients here what does not work (pretty much everything) and from that you actually learn something about the disease.
You also learn something about how hard it is for those with it.
As for people having a PhD in themselves, I'm sorry but I really have to disagree. I'm smart and knowledgeable and eminently capable of doing research. But that did not stop me from being completely ignorant about my depression. That needed someone else's expertise to show me stuff about myself. I agree that patients have a strong motivation for doing research on their condition but I think assuming that people have done that research is not safe. That's no excuse for being rude but dammit I'd rather be rude than not ask the question that might make someone's life a lot more pleasant.
Besides it's either that or I have to weed Emma's garden and since I can't pull finger to weed my own ...
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I think as in most things it can be boiled down to "try not to be a dick".
Which is something a lot of people (including me) could benefit from remembering.
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It's a commandment for our times. But we're all such imperfect beings...
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I think I'm genetically programmed to advise
Generalising, it's how we blokes are inclined to respond. Sometimes very useful, other times the other person just wants to feel heard and understood. Especially when they're a woman.
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The advice thing is something I get particularly tetchy about when I'm pregnant. Especially when the advice is along the lines of "you shouldn't get so stressed" or "calm down", or, in one memorable case, "chillax." Has anyone who is genuinely upset about something ever felt better for someone saying to them "chillax"? Particularly when it is framed as "chillax, you need to think of the baby." Because it would be ok for me to be stressed and upset if I wasn't pregnant would it? Maybe I could just be happy and relaxed for the benefit of me, myself and I?
Ahem.
I read in a Kaz Cooke book once that when someone gives you advice it is often more about them than it is about you. I find that quite soothing.
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My personal thing if people ask for advice or anything with CFS is to say "I did... and I found that I felt..." - rather than saying "you should...". Because, as is obvious from what everyone's saying, it works in different ways with different people and when it comes to any treatment that does anything (even if it's a great old placebo effect) it's up to the individual to decide for themselves what to do.
But I hope I only really talk about it if people specifically ask.
I think to be fair to those who give advice though, part of what I noticed with people is that they tended to be people who really had an emotional investment in my well-being - so close family, friends, etc - and who, as time went by, really wanted to do something to make it better.
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The sunscreen song had it dead right on advice, as it did on so many other things:
Be careful whose advice you buy, but be patient with those who supply it. Advice is a form of nostalgia. Dispensing it is a way of fishing the past from the disposal, wiping it off, painting over the ugly parts and recycling it for more than it's worth.
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Has anyone who is genuinely upset about something ever felt better for someone saying to them "chillax"?
I think the only appropriate response to somebody who says "chillax", regardless of the circumstances, is a punch in the solar plexus surely?
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That would have made more sense after Gio's earlier comment about dicks, but seems a bit lost now. No, really it would have.
Carry on.
Hmm, Megan responded, so back goes the later bit.
** If you get away with that last comment Sacha, I'm officially Sulking.
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** If you get away with that last comment Sacha, I'm officially sulking.
I was going to address it. But...I'm tired. And hormonal. Seriously, would you all just listen to me for a second and NOT TELL ME HOW TO FIX THINGS?
Actually, I have had a little bit of experience with...sadness, this year, and honestly, the people who wanted to fix me, who wanted to tell me exactly what to do, and then got pissy when I didn't follow their advice? All women.
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