NPD Parent Online Support Groups

[touchpause13]

Figured this is something some of you might find interesting if you have an interest in cluster B parents. Basically it's comparing the online support groups of people who were raised by abusive narcissistic parents and online support groups of parents who have been estranged.

I'm kind of curious about what your opinions are of online support groups of these types, I mean it's pretty much all laymen talking about their own experiences which I can see as really validating, but also you could have the echo chamber problem. With the sites of estranged parents it seems like there is a fundamental lack of self-reflection of any kind, to the point of being down right delusional. But I'm just a lowly MS1 without a lot of formal psych training so I could be completely off base.

http://www.issendai.com/psychology/estrangement/index.html

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[wolfvgang22]

Same as I feel about this forum, or newspapers, or television, or anything else: It's fine as long as a person thinks critically and lay people don't pretend to be experts and mislead others. Fundamentally, it comes down to the fact that when people have freedom, they also have the responsibility to make their own choices for better or worse.

 

[Ceke2002]

Figured this is something some of you might find interesting if you have an interest in cluster B parents. Basically it's comparing the online support groups of people who were raised by abusive narcissistic parents and online support groups of parents who have been estranged.

I'm kind of curious about what your opinions are of online support groups of these types, I mean it's pretty much all laymen talking about their own experiences which I can see as really validating, but also you could have the echo chamber problem. With the sites of estranged parents it seems like there is a fundamental lack of self-reflection of any kind, to the point of being down right delusional. But I'm just a lowly MS1 without a lot of formal psych training so I could be completely off base.

http://www.issendai.com/psychology/estrangement/index.html

Just from my own personal observations - on the mental health support forums I frequent if any of the cluster b type members stick around for long enough, then they more or less welcome things like being challenged or questioned over their behaviours/responses/negative thinking patterns, etc etc. Like it someone posts how a certain situation triggered off certain emotions and reports that they acted out in a certain way, they'll get support and understanding and a lot of people saying 'yep, been there and done that', but they'll also get people saying stuff like 'well what do you think you could have done differently? When you're in this situation again what sorts of tools can you have in place to help you respond in a healthier way', and so on.

When it comes to the parent forums I've visited from time to time that have anything to do with Eating Disorders or Borderline PD (or both), then there always seems to be a lot of 'nothing's my fault, lalalala I can't hear you' type stuff going on (and a lot of echo chamber type stuff, like you said, where everyone just echoes their agreements and does their own 'not listening, can't hear you' type dance around the issues.

 

[Ceke2002]

I'm just starting to read some of the points raised in that link, very interesting and definitely seems to match in with a pattern I've observed from both sides of the fence in terms of different forums. I'll probably have more to say on this subject at later points, as I read more of the link/site itself, but this was something that definitely stood out for me:

"...most of the people who know why their children are estranged filter away from the group quickly. I don't know where they go, but I suspect they find help in other groups—parents with drug-addicted children find groups about dealing with drug addicts, parents whose children are in the control of an abusive partner find groups about partner abuse. What's left are the people who have no idea why their children left them. And that, my friends, is a vast and waving red flag."

This has definitely been an observation of mine over the past over a decade now of being involved in support forums online. Following what I wrote in my previous comment, in terms of forums for mental health support (which does include a lot of people with histories of abuse), like I said the ones who stay tend to know they have a problem, and they tend to actually want support and help for it. The flip side of that of course is the ones who either don't think they have a problem at all, or if they do accept they have a problem then there behaviour is still never there fault, they don't need to take any responsibility whatsoever, and all they really want is an echo chamber around them reiterating and repeating what they've already decided is the truth of their situation. And if you challenge them on any of that, even in the most understanding, supportive way possible, then up will go the cries of 'why are you attacking me?' 'OMG you're all so mean. I thought this was a support forum' - at which point they will typically flounce off with as much dramatics as possible, and presumably find other forums that will just parrot everything back to them that they want to hear.

I don't spend a lot of time on mental health related parent and carer forums, but the occasional times I have, or do, definitely a similar pattern can be seen emerging. There are the parents who really want to understand what their child is going through, they want information, they want to know what the latest research says, they want to know the different treatment options, they might struggle with feelings of guilt and ask themselves 'what did I do wrong?' from time to time, but most of all they just want to know how to help in the best way they can - even if that does mean having to take a look into some of the dynamics of the family unit and look at where it might be improved. On the flip side of that, again, you have the parents who have read a few blog posts and decided they know exactly what is wrong and how to deal with it and nope they don't need to look at their role in anything whatsoever and 'OMG how dare you say this is all our fault, I thought this was a support forum' - at which point they invariably leave in a ginormous huff and then a month later you'll see them posting on another forum where everyone just seems to be parroting everyone else.

Very interesting discussion topic by the way, touchpause. Thanks for posting it, and the link as well.

 

[Doctor Bagel]

I've done some brief looking at online support groups, and they're fascinating. I wonder if people could do studies looking at things like word usage. One thing that strikes me about a lot of the forums directed at psych patients are how strongly people identify with their diagnoses, which I find profoundly troubling. Of course we're all met those patients who see themselves as a collection of diagnoses rather than as an actual person so it's not too surprising -- I think that way of thinking, though, is reinforced in these online support groups.

 

[Doctor Bagel]

This struck a chord with me. It is a constant barrier in providing orthopaedic care as well, which is interesting. I can't tell you how many people I see for the first time, who have never had surgery, who answer the question, "How did your _____ pain start?" by giving me a diagnosis. Sometimes this comes from their primary care physician or physical therapist, but often it is just what they came up with on their own. And it extends to other areas as well. What kind of exercises did they have you do in physical therapy? "The ones for rotator cuff tears." Do you know what kind of injection you had? "The kind they give for meniscus tears."

For a while I thought it was a problem with the way I phrased questions, so I made efforts to ensure I wasn't inadvertently eliciting "medicalized" language from patients. I started asking questions like, "What were you doing when you got hurt?" or "What position was your shoulder in when you fell?" This got better initial information, but with many patients still ended with, "...and that's when I irritated my biceps tendon."

Not only is this irritating, but I think also inhibits care planning. I have a lot of patients who are much more certain of their diagnosis than I am. Plus, people who strongly identify with their diagnosis (great phrase by the way Dr Bagel, gonna keep that in my back pocket) tend to also strongly attach to their preconceived idea of what appropriate treatment is. This is especially true with surgical options. Meniscus tear? Surgery. SLAP tear? Surgery. MCL tear? Surgery. In reality, most people with all these conditions don't end up needing surgery, but once they expect it, it is very difficult to get them to actively engage in a structured rehab protocol. Then they "fail" non-operative measures, and they get booked for the OR, maybe needlessly.

I'll tell you, I much prefer patients who come in going, "My hip hurts, I don't know what I did," than people who come in with an MRI, a stack of physical therapy notes, and detailed plan for what I'm "supposed" to do. I think the former tend to do a lot better, regardless of their diagnosis and treatment.

Wow, I wouldn't expect people to be so attached to their musculoskeletal diagnoses as they are to having bipolar disorder. Hey, though, why bother going to medical school when you can figure everything out from the internet.

 

[Shikima]

Rise of the internet doctors.

 

[Ceke2002]

I've done some brief looking at online support groups, and they're fascinating. I wonder if people could do studies looking at things like word usage. One thing that strikes me about a lot of the forums directed at psych patients are how strongly people identify with their diagnoses, which I find profoundly troubling. Of course we're all met those patients who see themselves as a collection of diagnoses rather than as an actual person so it's not too surprising -- I think that way of thinking, though, is reinforced in these online support groups.

There is definitely an identifiable trend with psych forum users in terms of usage patterns over an extended period of time (around 7-10 years). It's one of those things though that I think you really have to be involved with a forum and its culture to see the patterns emerge. Someone looking in from the outside will most likely get a skewed view of the overall picture, because the forum users who post the most also tend to be the ones who are either a) newer to the forum and yet to move onto other stages of usage, or b) very entrenched in their disorders and almost incapable of moving beyond a very limited scope. Speaking in general when someone first joins a support forum there tends to be an overwhelming sense of 'finally, people who understand me', which translates across to a sense of community identification with a shared experience of illness (which in turn can, and often does end up becoming more of a self identification with the individual's own diagnosis). So you'll see a lot of threads centred around 'what's your diagnosis', 'how long have you been sick', 'when were you first diagnosed', 'tell me about your behaviours', 'does anyone else do XYZ?', 'is it just me, or...?', and so on. Following on from that initial stage, unless someone is particularly enmeshed in their illness and they get stuck in the first stage of usage without something dramatic happening to change their behaviour, most forum users will eventually start to question things like 'is it really healthy for us to identify with our illnesses the way we do?', or 'does anybody else wonder if we're inadvertently normalising our behaviours with what we post? At that point you'll probably start to see a fluctuating frequency of posting, as well as a change in posting style (far more likely to stop, think, and challenge, rather than just immediately rushing towards 'Omg, me too!!! *quick let us all talk about our symptomology in minute and graphic detail*). At that point typically the forum will begin to operate as an actual means of support for the individual, because they start to move away from that communal sense of diagnostic identification, and more towards 'okay, I have XYZ diagnosis and I need some support to deal with it'. Not all forum users will move onto the other stages, although with the forum I've utilised for MH support over the past 12 or so years I'd say a good 70% have to one degree or another, and that's the various stages of forum usage when someone is in recovery or looking to improve treatment and/or stabilise their symptoms. Again speaking in general when someone is in the early stages of/new to recovery, treatment, looking at options to stabilise their symptoms, whatever else, their forum usage will go up again but now it becomes more along the lines of 'reassure me that this is okay' 'please help me stay on track if I'm struggling', rather than 'so tell me about your illness'. Once someone is stable in their recovery/treatment plan it's at least 95% certain that they will leave the forum eventually, or at least become a very sporadic poster (support forums can become as much a source of frustration as they can a source of support at this stage, because it can be very difficult to sit and read the same people, posting the same stuff they've been posting for the past however many years, and not want to yell at them to 'change something goddamnit, if you're that miserable then FFS I know it's not easy but stop just sitting there repeating the same BS over and over and change something!'). Given enough time some users will return and become mentors of sorts for the other members in those same early stages they were once in, some will drop back in periodically to let people know they're still alive and doing well, some unfortunately will return having relapsed and looking for support, and some simply don't ever return.

 

[MacDonaldTriad]

I would like to survey some of these support forum users. Here is a good one:

Do you strongly agree, agree, feel neutral, disagree or strongly disagree with the following:

“My fibromyalgia (note this is only properly phrased as my fibromyalgia, never “I suffer from fibromyalgia”) is real, but what a bunch of somatic whack jobs hang out on this forum.”

I have a rare chronic condition and I found a forum about it. I lurked for a little while, but then I became so creped out, I never went back. Most of it was complaining about how the medical community misdiagnosed them and told them it was all in their head. The more I read, the surer I became that the most vociferous posters were somaticizing. I’m a psychiatrist; a lot of things can be “all in your head”. Of course I reminded myself not to make medical judgments from a forum, but I haven’t been able to get myself to return.

 

[Ceke2002]

I would like to survey some of these support forum users. Here is a good one:

Do you strongly agree, agree, feel neutral, disagree or strongly disagree with the following:

“My fibromyalgia (note this is only properly phrased as my fibromyalgia, never “I suffer from fibromyalgia”) is real, but what a bunch of somatic whack jobs hang out on this forum.”

I have a rare chronic condition and I found a forum about it. I lurked for a little while, but then I became so creped out, I never went back. Most of it was complaining about how the medical community misdiagnosed them and told them it was all in their head. The more I read, the surer I became that the most vociferous posters were somaticizing. I’m a psychiatrist; a lot of things can be “all in your head”. Of course I reminded myself not to make medical judgments from a forum, but I haven’t been able to get myself to return.

My response to that would be 'Are you a Doctor? Have you actually examined any of these 'somatic whack jobs' within a medical capacity? If not, then eff off!'

I find pain management forums are some of the worse - for every one patient who is willing to accept that emotional health can have an impact on pain management, there are another dozen all jumping up and down going 'I'm not crazy, how dare they tell me it's all in my head, hang on, it's time for my 2 'o' clock dramatics, watch me flail about making wild accusations, which totally have nothing to do with my emotional state being unstable whatsoever'.

The forums I utilise are typically smaller than average, have maintained a steady population of users, and are extremely close knit (we actually have a few Doctors and Nurses on the forum who are there to receive support for their own mental health issues). We generally tend to know pretty quickly whether someone is going to fit in with the forum culture, and those that don't, well it's not like we exactly run them out of town, but at the same time when they don't get the echo chamber responses they're looking for ('oh yes, you should totally down an entire packet of laxatives and set your goal weight at 60 pounds, that's perfectly safe and healthy, clearly your doctor is just an idiot' ) they tend to just leave anyway. It does keep the forum more geared towards actual support (the newcomer 'syndrome' of communal experience of disease identification aside); however, the flip side of that is when a support forum actually works, and the people who use it do develop very real relationships with one another, any deaths in the community tend to hit like a tonne of bricks.

 

[MacDonaldTriad]

To me it was almost akin to the old joke about a support group for Jesus Christ identity delusion patients. Everyone’s criticism of the validity of each other’s problems was so thinly vailed. The latent language in between the lines was something like: “my condition is completely physiologic and don’t even try to suggest that I look at my demons… now you on the other hand….”