some definitions and clarifications

Discussion in 'Fibromyalgia Main Forum' started by AuntTammie, Jun 14, 2009.

  1. AuntTammie

    AuntTammie New Member

    I can’t believe that I just wrote all this, considering that I have been seriously crashing, and I am very sorry this is so lengthy, but given all the psych garbage that has been thrown at us and the fears that people have about even discussing all this, I thought I would clarify some psych terms and how they do and do NOT apply to many of us.....this kind of goes along with another thread, but since that thread has veered off its original topic, I thought I'd start this one by itself (also, please note that I am giving some facts, as well as my own thoughts - I do not believe that everything I wrote here necessarily applies to every PWC....also I wrote this in microsoftword and for some reason, the parts that I bolded and underlined do not show up as such here, but I do not have the energy to go back and try to emphasize certain points in another way, which is unfortunate, becasue I think that certain things really should be emphasized.)

    -somatization disorder and malingering are two distinct disorders, and factitious disorder is also slightly different (briefly summarized from the DSM IV TR - the psych diagnostic bible – as follows)

    (somatization is not intentional; ie it is not a case of symptoms being fabricated to get out of something, it has to start before the person is 30 yrs old and usually starts by adolescence, cannot be explained by a known general medical condition - one of the sample conditions to rule out, interestingly enough is lyme, however, as we know, there ARE also biomedical markers for CFS/ME, and somatization has to include at least 4 different pain symptoms, 2 different GI symptoms, 1 sexual symptom, and 1 pseudoneurological symptom....and it has to occur over a period of several years.....for some of us, this ALMOST fits - except for the fact that there have been many, many studies proving the real biomedical aspects of our illness, and interestingly enough fatigue is NOT listed as one of the symptoms for somatization - with the CDC so adamant that CFS/ME is pretty much ONLY fatigue, it is odd that anyone could try to say it is somatization....and for some of us there are several reasons why this does not fit at all)

    (malingering is "the intentional production of false or grossly exaggerated physical or psychological symptoms, motivated by external incentives, such as avoiding military duty, avoiding work, obtaining financial compensation, evading criminal prosecution, or obtaining drugs"...."malingering differs from factitious disorder in that the motivation for symptoms production in malingering is an external incentive, whereas in factitious disorder, external incentives are absent....EVIDENCE OF AN INTRAPSYCHIC NEED TO MAINTAIN THE SICK ROLE SUGGEST FACTITIOUS DISORDER." (caps are mine) - does that last part sound sickeningly familiar?! Wessley and company are taking this stuff from a real illness – just NOT ours)

    -to get a diagnosis of major depressive disorder, one has to rule out symptoms being caused by a general medical condition (in other words, being depressed is often caused by having a general medical condition, and if that is the case, then the primary diagnosis is NOT depression....that should be enough for people to realize that CFS/ME is not simply depression, but also the fact that there are actually people with CFS/ME who are not depressed should also show that fact....there is also other evidence proving that CFS/ME is not depression, but just going by the DSM alone, it should show that this is not depression)

    -it should also be noted that diagnosing anxiety disorders also includes ruling out general medical conditions, so similar to depression, it is noted that having a medical condition can cause anxiety to the extent that if one has a general medical condition, anxiety would not be the primary diagnosis (interestingly some of the medical conditions that are to be ruled out before diagnosing anxiety include; endocrine conditions, cardiovascular conditions, respiratory conditions, and neurological conditions, many of which are common to PWCs)

    -the problem is that people like Reeves, Wessley, and many psychiatrists want to take bits and pieces of these definitions and ignore the rest, just as they continue to ignore all the studies that have proven various biomedical abnormalities with CFS/ME….the reasons for that are political and financial, and others have explained that part of the picture much better than I can, so I won’t go into that….Hillary Johnson is the best source I can point to, if you don’t already know about this and want to know more

    -these Drs want to say that depression is the cause, not a possible effect….or that avoiding responsibility, or exercise phobia, or “abnormal illness beliefs” and “embracing the sick role” are the reasons behind this…..in some cases, this is switching the cause and effect, in others, it is an outright fabrication

    ***the problem with this, though, is that some PWCs are caught in a bind, because fear related to the whole psychologizing bandwagon of Reeves, et al, and the public misconceptions, Dr misconceptions, etc., leaves them with no way to deal with the very real emotional impact of having such a devastating physical illness….and that can be almost as oppressing as the agenda coming from Reeves, et al

    -there are mind/body connections in ALL illnesses – that DOES NOT mean that all illnesses are psychological – it just means that the physical and emotional parts of all people interact and impact each other to some extent – it is common for a Dr to advise a cardiac patient to avoid stress- that does not mean that the Dr is saying that a heart attack is a psychological problem – it just means that stress affects everyone, and not in a positive way….this is just the way that our bodies are made….and many of us have noted that stress can exacerbate our symptoms – that doesn’t mean that CFS/ME is in our heads

    -in a recent thread, it has been argued extensively and not-so-gently that acknowledging any sort of emotional component is wrong, because it gives the psych people ammo….however, as I already stated, ignoring the emotional EFFECTS of having this illness is nearly as harmful to some

    -there are big differences between saying that this illness is caused by something psychological, and saying that having CFS/ME brings about its own emotional side effects, just as there are big differences between using something like CBT (or other forms of counseling) to help someone deal with those effects and to help deal with the changes in one’s life that chronic illness forces, as opposed to using CBT to try to eliminate “abnormal illness beliefs”….in other words, one way of using CBT is to help someone deal with having an illness – the other is to try to convince the person that he/she does not actually have that illness (completely opposite uses)….many people with terminal illnesses seek counseling – this does not mean that the illnesses are all in their heads or that getting counseling will make them get well – it just helps them to have a way to cope with their illness

    -now getting to the concerns brought up about getting well……they are very normal, realistic concerns for some PWCs to have – as I pointed out in the other thread, it is like culture shock: living with a chronic illness, esp one that is very isolating is extremely different from being a functioning part of society; so different it is like a whole other culture (complete with different ways of relating, different ways of managing daily life, even somewhat of a different language)

    normal, healthy people experience anxiety associated with change, even sometimes with fairly minor change, and they definitely go through a period of adjustment, usually associated with some anxiety, when they go through culture shock, so it should not be that hard to understand that people who have been sick for a long time might have some challenges with trying to resume normal life, and they might have some anxiety associated with being unsure how well they will be able to do their jobs, relate to others, get used to a very different schedule, etc., because these skills may have become rusty.... like someone else pointed out, moms who have been out of the workforce for awhile raising their kids often have some fears about getting back out there – these are moms who have been a part of regular life, just not a part of the workforce, and yet their fears are understood……some of us have not even been a part of regular life, let alone a part of the working world in a long time– is it really so strange that some of us might have some worries over whether we will be able to do our jobs well, etc?

    *That does NOT mean that we don’t desperately want to have the chance to find out. There is a huge difference between pretending to be sick so that we can avoid working and being legitimately ill for so long that we question our skills and abilities, but still want to work and to live.

    -Being able to talk about these concerns could go a long way towards being able to manage them effectively and doing a good job in returning to work, life, etc….ignoring them or denying them might keep the evil psych people off our backs, but it won’t help with the adjustment to real life (and, being that stress does impact our health, having too much trouble adjusting could even lead to relapse ….somehow, I think that scenario could actually give the other side more ammo, too)

    In case anyone is wondering about my credentials in writing this, I should note that I have an MA in counseling (which, though related, is NOT the same as being a psychiatrist or psychologist....thankfully so, since I am beyond disgusted with many people in those professions, though there are actually some good ones out there)
  2. frickly

    frickly New Member

    I share your thoughts and concerns. I have spent several years being afraid to bring up my CFS issues with doctors with the fear that they will label me a hypochondriac, depressed or just weak. In fact, this is what often happened. I am saddened that I am beginning to feel the same way about posting my difficulties here in dealing with this illness.

    Part of what interested me in this particular forum is the extensive knowledge that many people on this forum have. Also, rather than settling on pain medications and accepting this illness they are fighting to find a way to heal themselves.

    I also feel there is a definate place for venting and complaining about this disease. I have done plenty of that myself. This is a good way to get your feelings out and move on to a better place. A support group like this one should support people no matter where they are in their illness.

    Personally, I have fought for years to get help for my son who has autism, adhd, ocd and tourettes. I beleive strongly that autism and CFS have a close connection. I have read more books and studies on these issues than I can count and it has taken every ounce of energy I have find help for my son. Now, my four year old daughter contracted mono and has never been the same. I am fearful that her future will be simular to mine. This is why I spend all this time on this subject.

    I am telling you all of this because it is so insulting to be labeled a malinger on this site or someone who dosn't care enough to fight for a cure in this disease when in fact, I can't think of fighting any harder than I have for several years, for my children and me. I think we need to stop making assumptions about people we know little about and just support them. Sometimes, things are better left unsaid.

    I can tell you feel strongly about this issue, as do I. But I fear that this post will go in the same direction as the other which only seemed to hurt people rather than support them.

    Take care,
  3. Rafiki

    Rafiki New Member

    You wrote:
    "EVIDENCE OF AN INTRAPSYCHIC NEED TO MAINTAIN THE SICK ROLE SUGGEST FACTITIOUS DISORDER." (caps AuntTammie's) - does that last part sound sickeningly familiar?!"

    Yes, it does! It sounds very much like what Joey wrote. The intrapsychic need being the need to remain ill because of the fear of being a well person.

    So, you must agree then, that was a hugely problematic statement to make given that it exemplifies factitious disorder.

    The entire debate resulted, I believe, as a result of an ill considered, sweeping statement and an audacious use of pronouns.

    Peace out,
    Rafiki

    PS
    I think we long ago settled mind/body connection - real ~ resolved.
    I think we long ago settled that stress in so many if not all diseases is a killer ~ resolved. And, of course, chronic illness is stressful - chicken/egg, egg/chicken.

    I don't think it was ever about any of that.

    ETA I've always enjoyed your posts. Please forgive my exasperated tone; I'm just frustrated.

    [This Message was Edited on 06/14/2009]
  4. skeptik2

    skeptik2 Member

    I think this is an excellent post, and especially for newbies to read. It is very well done, aunttammie, and I congratulate you!

    It does spell out the flaws in the CDC's "empirical definition" clearly to me, and it also expresses the mind/body connection to every thinking body that exists in life.

    I think John Anderson is right about so many with ME are cowed by the CDC; I remember when I first got sick and questioned my own mind and body...did I WANT to be sick? That's what the shrinks were saying...then I got a shrink that believed every word I said, got me on appropriate meds for sleep, and others for pain and cognitive boosting. She says, you are very sick, for crying out loud, of course you have anxiety!"

    I is so valuable to have doctors who understand the mind/body connection, but do not presumptively jump to the mind causing us to be sick, and who will find either cause that is giving us trouble, and treat it.

    It is so easy to be angry with this illness; the rage in some of my fellow PWMEs is unreal...but, that's where they are in their illness, their burden, their path, right now...and that' ok, too.

    Thank you again, aunttammie, for a valuable post, and

    rafiki, your comments are always so thought provoking...thank you for being you!

    skeptik2
  5. AuntTammie

    AuntTammie New Member

    I really appreciate the responses to this and I just wanted to let you all know that I will try to respond back more thoroughly soon.
  6. AuntTammie

    AuntTammie New Member

    I definitely appreciate the link....I'm always interested in finding more research although I am actually very familiar with several of the sites that come up when googling this link. I briefly looked over the others, though, & bookmarked a couple for future reference & further reading.....I am wondering, though, if you referred me to this list just to give more general resources, or if you did so because you feel that my thread missed something or misrepresented something (I am perfectly ok with either reason - just unsure which you intended, and if you feel that I messed something up, I'd like to know what so I can look into it further)
  7. AuntTammie

    AuntTammie New Member

    sorry it's taken a little while to respond to this

    I appreciate what you wrote and agree completely with your statement, "A support group like this one should support people no matter where they are in their illness." I do think that overall, this board does do a good job of that. For the most part, when people disagree here, they do it gently. Part of the reason that I posted this thread was because people were getting quite heated on this topic and I don't want to see that sort of thing continuing. I have absolutely no problem with people disagreeing - that can be a really valuable way of learning more, discussing stuff, spreading info, etc....but I hate to see it turn mean, esp when so many of us already have so little left in the way of friends and supports who actually understand. The emotional impact of having this illness can be so rotten, I would hate to see people be discouraged from seeking support, whether that be here, thru counseling, or thru some other source.

    I am sorry to hear of your children's problems, and I also really hope that your daughter gets better - it's so sad to know that so many children are dealing with this....and at 4 yrs old, well that is just heartbreaking. I hope that there is help for your son, too. I am quite sure that as a parent trying to fight for your children, you are anything but a malingerer. I don't know how you manage being sick yourself and trying to help them, too.

    Again, thanks for writing in response to this.
  8. AuntTammie

    AuntTammie New Member

    I can't imagine why you are so exasperated! LOL ; ) Don't worry, your "tone" didn't bother me.....I wrote this partially out of feeling frustrated and exasperated myself, and partly because I don't like to see our (usually caring and supportive) board get so angry. Since I have a background in all this stuff, I thought maybe I could present the whole thing in a balanced, factual manner (I hope that doesn't sound like I think I am superior to anyone here or anything like that - I definitely do NOT think that I am)

    I was also just attempting to put it all together and give a bit more background for those who might not have been on here long, or might not have read other threads where the mind/body connection, stress, etc. was "resolved"....and there are some terms that I have seen used on this board that are similar to one another, but have very different meanings as far as cause and effect, and how they are being used for/against us by the psych docs and others.....I realize that many people do already understand a lot of this stuff, but I suspect (I could very well be wrong) that there are others who are confused or don't quite understand why people were getting so worked up about this subject

    anyway, I am glad to know that you enjoy my posts (thank you!), and am sorry if this one was not so enjoyable : ) ...half the time I am writing (at least) I swear it is a miracle if I even wind up making sense, bc of brain fog.....I do try to be very careful about those pronouns, though (& was esp so with this one!) so that everything I write that is not simply stating a fact is clearly obvious as my opinion, applying perhaps only to me
  9. AuntTammie

    AuntTammie New Member

    Wow - thanks for the compliments! I was sort of worried that I would be totally attacked for posting this.....wasn't too worried, bc I do understand why people get so upset about all this, but still.....I really value having this (mostly safe and supportive) place to discuss, learn, vent, get support, etc and I would hate for it to start to feel unwelcoming

    anyway, all that is to say that it was a very pleasant surprise to read your response and it really made me feel good....so thanks again
  10. frickly

    frickly New Member

    Thanks for responding to my post. I am glad things are moving in a more positive direction. The negative energy surrounding some topics cause new people to the board, like me, to think twice about sticking around.

    I do appreciate the discussions about causes, treatments and politics but when done in a non accusatory manner. I did watch the CDC's video on the 5 year plan. It was long and kept timing out. Was pulling my hair out part of the time but I am glad I watched it as I have a better understanding of whats going on.

    Take care,
  11. Khalyal

    Khalyal New Member

    You put a lot of thought and work into that post, and I really appreciate where you are coming from! Thank you, it really spelled out some things and gave a lot of clarification. Wonderful job!

    Khaly
  12. jasminetee

    jasminetee Member

    I was Dx with Somatisation Disorder by my LTD when I first applied for disability. I didn't realize what it meant but I persevered to make them change it because it wasn't the right Dx. And "pick and choose" is right, the docs and shrink they sent me to certainly did that as I don't fit the definitions at all. They finally changed it to FMS but never did accept the CFS. At least they no longer force me to see a psych which was a waste of my time and energy and hers. When I pointed this out to her she got angry, not with me but at my LTD for using her and for denying my time slot to someone who really could benefit from her training and expertise. In the end, she became one of my biggest supporters in getting my Dx changed.

    Thank you for explaining all of this Aunt Tammie. I learned a lot. You bet this is an emotional topic for us.

    You've made excellent points regarding the issues we all deal with. This is so true and yet completely unacknowledged by almost everyone around us: "it is like culture shock: living with a chronic illness, esp one that is very isolating is extremely different from being a functioning part of society; so different it is like a whole other culture (complete with different ways of relating, different ways of managing daily life, even somewhat of a different language)"

    I hear what you're saying and I agree with you.

    tee

    [This Message was Edited on 06/17/2009]
  13. AuntTammie

    AuntTammie New Member

    I will try to respond better soon, but I am really crashing, so if I don't manage to get back to you personally, I am really sorry.....I have read all the responses, though, and I am so thankful that people understand what I intended with this thread and that people seem to really appreciate what i wrote ....thanks so much for the comments and compliments-I'm glad that people are finding this helpful
  14. AuntTammie

    AuntTammie New Member

    thinking about the idea of culture shock more and it hit me strongly that much of what we deal with due to being sick with CFS/ME is similar to what I studied in grad school re: racial and cultural prejudices - the way that various races have been historically treated, discriminated against, looked down upon, oppressed & silenced, etc and the way that others often do not seem to understand or care about the impact this has on them (obviously I knew about this from sources outside grad school, but it was very thoroughly covered there, and I learned a lot)

    not sure if this makes sense to others and I am not trying to downplay how bad some races have had it (and some still do unfortunately), but I do see some major similarities
  15. Khalyal

    Khalyal New Member

    You couldn't have said it better. I have thought about this a lot, too. In my (admittedly feeble) mind, I guess I liken it to the racial prejudice that led to the holocaust. As if there are sub-classes of people, and we are currently "it".
    [This Message was Edited on 06/18/2009]
  16. dannybex

    dannybex Member

    "-there are mind/body connections in ALL illnesses – that DOES NOT mean that all illnesses are psychological – it just means that the physical and emotional parts of all people interact and impact each other to some extent – it is common for a Dr to advise a cardiac patient to avoid stress- that does not mean that the Dr is saying that a heart attack is a psychological problem – it just means that stress affects everyone, and not in a positive way….this is just the way that our bodies are made….and many of us have noted that stress can exacerbate our symptoms – that doesn’t mean that CFS/ME is in our heads

    -in a recent thread, it has been argued extensively and not-so-gently that acknowledging any sort of emotional component is wrong, because it gives the psych people ammo….however, as I already stated, ignoring the emotional EFFECTS of having this illness is nearly as harmful to some..."

    EXCELLENT POINTS.