Extreme Measures: Can one sue their family of origin?

[Dreambirdie]

I just replied to your post dreambirdie and it ate mine too! And I'm not up for a repeat either!!

Well darnnnnn the the damn thing!

:Retro tongue::Retro tongue::Retro tongue::Retro tongue::Retro tongue::Sign giggle:

 

[jenbooks]

Here are my thoughts.

1) No you can't sue your family. But if you want to sue them, then there is a lot of emotional work to be done as you are so resentful and angry and that's not good for you. You expect them to help you, but the fact is, they do not owe you anything. In fact your brother has been generous. Maybe he's tired of helping out, and it seems endless, and you're not getting much better (to his perception) and the gains don't seem worth it. He is still helping you out. But rather than appreciate it, you are angry you don't have more from him and others. Most families don't even give that much. People whose families help them out with treatments year in year out are very rare and special. If your family gives you ANY monthly help, please be appreciative for what they do. I'd be resentful of a sick family member who thought I wasn't doing enough, and who wanted to sue me if I did do less at some point for whatever reason. I don't owe that person anything. I didn't give to "look good" (I disagree with Kurt on that). I gave to help out, in what I felt was appropriate given my limited understanding of the situation. I'd like appreciation, and I can sense the deep resentment even if the person doesn't openly say they want to sue me...

(I'm talking in the imagined voice if I was in their position).

2) If you still feel they owe you anyway, and are indignant they're rich and fortunate while you are struggling, sick and poor, and you can't change that, then just try to detach. Just look at them as an income source no different than SSDI. Just say, I'm going to get this much income from them now.

3) Then come solutions. If you have severe MCS, there is a web page--that an MCS person started--where people can fundraise. I'm forgetting the URL right now--but if you PM me I will go try to find it. People can state their problems and needs. I know people who have gotten help from "STRANGERS" who understood their problems, either because they had them or a family member did or whatever, and they help out.

Another thought is--are you too disabled to do any kind of computer work from home? Can you offer to barter with your doctor--perhaps do records keeping or billing or SOMETHING from home to continue getting some of what you need? If your doctor cares, he or she might be willing to do that trade.

You are going to need to find other creative ways of meeting your needs to keep your gains. Don't give up your gains. Be determined that you will find other ways to do it--the above two are two examples.

4) My family never helped, was cruel, perhaps tried to destroy me, etc etc. I never really detail it on here, so maybe people won't believe my story was as bad or worse than theirs, but indeed it was. Most people don't help. People only help when they've suffered too and their hearts have been broken open.

Therefore I recommend the following attitude:
1) Try to be grateful for their generosity--it's more than many (brother)
2) If you can't, just think of what they will give as an income source
3) Do the math. Then fundraise--either on the web, and/or if you are not bedridden with no ability to do anything at all, offer sincerely to do an exchange with your doctor for whatever work is valuable to him/her now or in the near future. An even exchange--so you can afford the treatments.

 

[Dreambirdie]

Hi Jenbooks--That's great pragmatic advice, and it makes a lot of sense on the practical level. Very good to know there is a MCS fundraising page. I am going to make a note of that for future reference. However, and also, there is the issue of the emotions to contend with, and that is just as important in the bigger picture of this kind of situation. Family issues are SO INTENSE to process, because of our deep-seated, primal expectations of what family is "supposed to be." I think that coming at this from both sides is necessary, when there are such strong emotions arising. If you want to find some level of real relief from the hurt and pain, you have to find a way to embrace it and release whatever part of the hurt and anger you can. It can take a long time, and usually it does, but the movement forward is what matters.

 

[zoe.a.m.]

Hi Jenbooks,
I think some of your points are really valid, and I have actually tried to work out any type of work/trade with the 3 people I see, and, so far, no one has found an appropriate need or has work not already covered. I continue to hope that will happen though, even if with one, it would make some much-needed room.

Before getting ill, I had climbed up and away from an extremely abusive family and really liked my work which consisted of advocating, listening, communicating and educating parents, guardians, teachers, school districts, etc. Not until recently did it occur to me that I had to find a way to do that for myself. I don't think it will change your mind in any way, but I was offered help in response to being so severely ill that my doctor, who also was my brother's doctor, felt he had to let my family know what was happening as I couldn't care for myself.

It's true that there is no changing other people or their minds, and maybe the energy I spent to start this thread could have been used instead to accept the circumstances, but it was a step I decided to take along the way to address how I feel, and how much I wanted other perspectives! I don't know if anyone is really qualified to tell someone else what feelings are motivating them and whether they're appropriate.

The SSDI system and Medicare came about (as did the original welfare and many other social services programs) to fill what was viewed as the emergent need to help those least able to help themselves. So, to some degree, the foundation of any society (where healthcare and quality-of-life are addressed) is that those who have something to give agree to help those most in need. I'm not saying this is popular in the US any longer, just that, at one time, it was felt there were moral and ethical obligations to assist others. I think it's important to consider that, due to the lack of social programs--functional, funded, or otherwise--many adults are in the position of needing assistance from family where it often falls on a deaf culture.

I don't think suing them is a realistic goal or idea, but it comes from an important place, and I'm willing to watch these emotions play out, though maybe PR is not the most appropriate venue...?

 

[Dreambirdie]

It's true that there is no changing other people or their minds, and maybe the energy I spent to start this thread could have been used instead to accept the circumstances, but it was a step I decided to take along the way to address how I feel, and how much I wanted other perspectives! I don't know if anyone is really qualified to tell someone else what feelings are motivating them and whether they're appropriate.

I don't think suing them is a realistic goal or idea, but it comes from an important place, and I'm willing to watch these emotions play out, though maybe PR is not the most appropriate venue...?

Zoe--I think it was a GREAT IDEA to bring up the issues that you did in this thread. You are definitely not the only one who has felt like suing her parents, or maybe even poking their eyes out with an ice pick. Growing up in an abusive home, and then having to deal with many years of a serious debilitating illness on top of that, is a lot to have to bear. Many, if not most of us, bear these pains in total isolation, with little support or understanding from other humans. Having an opportunity to share one's feelings, hear others responses, and get a perspective on the various coping mechanisms others have developed to cope with this kind of emotional stress can be very helpful for anyone who has had (or still has) these issues buzzing around in their psyche.

The SSDI system and Medicare came about (as did the original welfare and many other social services programs) to fill what was viewed as the emergent need to help those least able to help themselves. So, to some degree, the foundation of any society (where healthcare and quality-of-life are addressed) is that those who have something to give agree to help those most in need. I'm not saying this is popular in the US any longer, just that, at one time, it was felt there were moral and ethical obligations to assist others. I think it's important to consider that, due to the lack of social programs--functional, funded, or otherwise--many adults are in the position of needing assistance from family where it often falls on a deaf culture.

SSDI and Medicare must have been in part influenced by the reality of the greed, selfishness, and lack of compassion so prevalent in families. Of course, some family members just do not have extra resources to share with those who are ill. But those who are well-off and unwilling to help are definitely guilty of unkindness and stinginess. Calling them out on their lack of conscience is appropriate, and if they don't like the truth, then that's their problem. On the other hand, it can be a huge drain to dwell on things we will never be able change. So ultimately, you have to ask yourself, how much of your precious limited energy is it really worth to spend/waste on being pissed off at assholes? Hopefully, as little as possible.

In the current political climate, where it has been nearly impossible to get billionaires and corporations to pay their damn taxes, it seems that moral and ethical obligations to the poorest, oldest, and sickest ones among us are being rapidly shoved down the toilet by the powers in charge. Lately the dominant collective attitude, one of panic about the global financial crisis, and the ballooning deficit here in the US and in the poorer states of the EU, is having a huge influence on a growing compassionate deficit, its ugly little bedfellow. When in need of a scapegoat, blame the sick and the poor and the elderly. It's just an all too common agenda, and we are all being affected by it.

 

[leela]

Yes, there are so many great points here, covering lots of different angles.

You have done us all a service here, zoe, by posting your thoughts and questions.
So many of us are or have been in a very similar situation, or will be facing it at some point.
You have helped us all to explore important perspectives, to understand ourselves and others better, and even to notice the macro in the micro in terms of how our situation reflects the "sickness" of the collective.

Everything we do to support each other, like in threads such as this one, makes a difference, even if it hasn't solved your immediate problem completely.
I hope, I truly hope, that it does contribute to you, and all who share this terrible dilemma, in finding the best possible solution.

And while I am hoping for things, may that solution be a total cure for all of us without delay!!!

Love to you, zoe, and everyone here.
~leela

 

[jenbooks]

Zoe, I also think it's great you brought up your feelings. I'm just saying, being in the helpless victim role, enraged, is very bad for you.

How about asking your doctors if any of them need someone to call lapsed patients--ones who seemed to be gaining benefit but stopped coming? A friendly email or call, to see how those patients felt about their treatment, what worked, what didn't, and whether they'd like to visit the office again? Maybe a discount for a # of treatments if they return. Who knows. I'm thinking all this up on the spur of the moment. Doctors SHOULD want to retain their patients, and there is always patient loss over time especially if they are effective at what they do , but CAM (complementary alternative medicine) docs often have patients longterm, with the very helpful palliative treatments etc.

Zoe, as to your family only helping when the doctor said you couldn't take care of yourself, I still say there is some caring there. Some families wouldn't bother taking the call at all. Some families would try to institutionalize the physically ill member. Sometimes there is an active attempt to completely destroy the person. It could be worse. Not minimizing your situation, just seeing it on a bellcurve. Anyway, perhaps the best solution at this point is to look at the income you'll be getting, and determine to yourself that you WILL NOT GIVE UP YOUR GAINS. What do you need to do to retain them?

I've got to google that site now...here it is:

Practical Support for People with Multiple Chemical Sensitivity
practicalmcs.blogspot.com/

What do you think is the source of your illness? It seems the family system and stress play a role, because you pulled yourself out of it and became a helper, and then fell back into it getting so sick you had to ask for help from them...putting yourself back in the abused position. I'm not saying that's the cause. We can look at these illnesses from multiple causal viewpoints. So we can view it from a psychological viewpoint--and say--from that viewpoint, something deep in you wasn't quite ready to be free---what pulled you back? Guilt? Anxiety? Did the family appreciate you when you were healthy and an advocate--or were they abusing you? No need to answer. Just important questions to ask.

Then the illness can be looked at from a physical standpoint too. What caused it? Tickbites? Infections? Viral infections? Toxins? Mercury poisoning? Poor detox? Autoimmune? Hidden mold illness (far more common than people realize). Chemical sensitivities? Try to think about all the physical causes.

Then the illness can be looked at from a spiritual standpoint. It is asking you to find your deepest truth and set yourself free.

 

[zoe.a.m.]

Leela,
That's so funny that you said "micro" and "macro" because I use that expression sometimes and just used it in an email before reading your post! It's strange that this thread has been so busy since I usually don't post such personal or sort-of inflammatory ideas; I'm not sure if I usually just internalize more or keep difficult things to myself, but it's a nice thing about PR that people hit their limits, post, and sometimes there is a collective release of some sort.

Dreambirdie,
Yes, I think (and I should really just check Wikipedia!) that these programs began maybe even more at a time when families in total were crisis and prior to the 5-10% ruling class of today. At that point, the president spoke up and said, we've got to help people. What's interesting to me is that you'd think that need and addressing it might be more acceptable today rather than earlier in the last century and mid-century, but somehow, the last politician I can remember talking about how those with the most had an obligation to help those with the least was Ted Kennedy. I'm not one to opine over politicians too much at this point, but no one seems to have that basic resolve of past generations--be it religious or otherwise.

 

[zoe.a.m.]

Hi jenbooks,
That's a good idea about lapsed patients; I actually live in a an area where there is huge support for CAM and my acupuncturist/herbalist has been able to afford a staff and has his office run by a manager now. It's probably more likely that the hospital's family practice has the most needs, just not a 'volunteer' or part-time thing. I'm certainly going to focus on this direction though and hope that something opens up.

I think, quite recently, the belief that I was hanging onto that they did "care" was finally hit by a missile and now there is just debris. I have been threatened with institutionalization several times and I doubt that's off the table. What has kept them involved is that I've been living in an area where they used to own a property nearby and my "parents" used to be here as well. What I've seen (rather than what was said...), is that, now that both of those ties are gone--and with the prospect of losing everyone but my ARNP--(and having run a vigorous PR campaign about how my issues are psychological and "no one can stand me": this has been family-wide), they are now in the position to stop the visual and reality of caring. They have absolutely and flagrantly (even to my previous therapist) suggested I either institutionalize myself or 'just commit suicide already.' The blinders have been removed and my own denial has been annihilated.

After almost 4 years of working with Depth psychology, I can honestly say that the drama/abuse triangle is clear, but essentially I think it comes down to having the strength and qi I was born with (and that we all are, some more compromised than others) just sucked from me and used to keep the family intact despite its illness. It's usual to have one child who becomes the "problem" and the other members all hold this as sacred or else the entire system goes down. I was born to a highly unbalanced mother who smoked through her pregnancy, and had immune issues, severe allergies and dying teeth by the time I was 2. It's compelling to view it through a psychological model (and psychological stress is devastating), but I think it's just a matter of every system starting out compromised, my environment being emotionally toxic beyond measure, going into work/study that was loaded with chemical exposure, and my body just ran out of reserves and can't keep up anymore. I think there are ME/CFS cases where, though the intensity and severity of symptoms are the same, but probably the ones born with a stronger constitution, subjected to less allergens and toxins, or from a non-traumatic background may allow them improvement. Basically, I don't think this illness is personal but neither does it respond to a person's worth or efforts necessarily. Biology is sometimes just biology.

I'm thrilled to find there is more support for MCS out there! My CFS doc does believe that almost all cases of this had a sick-building involved in the beginning, and since I was new to the NW and not even cognizant of the damp environment, and working in a pretty awful building, it was likely just the last straw.

Spirituality and illness is a tricky thing. I think it's important to recognize, for example, that there are cancer patients who "heal" but succumb to their illness, and those who survive the illness but do not heal much other from an acute physical condition.

 

[Annikki]

Sorry you are going through this. This goes to show how the reverberations of denying an illness affect everything. My dysfunctional, mean parents have been delighted with me getting sick. It probably gives an abusive or smug parent a big boost to find their kids in these situations.

Honestly, every one of us should be raking in money from lawsuits from the mind numbing abuse and neglect. Imagine a doctor accused someone with a heart condition or cancer or AIDS that they were just a malingerers wanting attention!

The only autoimmune diseases doctors don't balk at are ones which are outright fatal like idiothrombocytopenic purpura . Lots of dead bodies look too bad for these ones to be ignored with Its all the same stuff in all of them: an immune system on the rampage.

Suing your parents may be a washout, but you have every right to feel that way. Logistically it may not probably work (which is a shame because its something I'd love to do after the nightmare I just went through- my mom lied to me about believing me so I moved back from Oregon to stay with her. Then she turned on me).

Litigation is a good idea, for sure. If you sued a professional over CFS (though it sounds like you have good doctors, so this is not what I'm suggesting for you), it would force at least a judge to review facts. The public light might be kinder than the glib medical community. What we need are some good lawyers

 

[Orla]

What do you think is the source of your illness? It seems the family system and stress play a role, because you pulled yourself out of it and became a helper, and then fell back into it getting so sick you had to ask for help from them...putting yourself back in the abused position. I'm not saying that's the cause. We can look at these illnesses from multiple causal viewpoints. So we can view it from a psychological viewpoint--and say--from that viewpoint, something deep in you wasn't quite ready to be free---what pulled you back? Guilt? Anxiety? Did the family appreciate you when you were healthy and an advocate--or were they abusing you? No need to answer. Just important questions to ask.

...Then the illness can be looked at from a spiritual standpoint. It is asking you to find your deepest truth and set yourself free.

I'm sorry but I find this psychologising ridiculous. You are suggesting she is hysterical (or possibly malingering, depending on whether she is consciously or unconsciously choosing to be sick). If screwed up psychology had a major effect on the illness then there would be a correlation between severity and psychological problems which there isn't (don't have the energy to look up the reference).

More generally, if psychological problems caused illness in general then the most screwed up would be sick and sickest, but this is not what happens. I think this sort of thinking is a bit like in the olden days some people thought illness was a punishment from God for past sins, or that the people who did best (materially) in life were being rewarded for being good. We still get echoes of this now with people thinking that if you make correct choices we will be healthy, and that we can have a lot of control over our health. So sick= bad/not living right, healthy= good/living correctly. It is comforting for the healthy to think like this but it is nonsense (not that I am suggesting making poor lifestyle choices either). Sometimes life is random and just sucks. I saw a good quote in a book on ME.

We die because we are mortal, not because we are lonely or have the wrong attitude. David Spiegel, quoted in Shattered: Life with ME, but Lynn Mitchell

And for the rest, we would all love to know what causes our illness (let's face it, literally the million dollar question) but we just don't know. I have personally tried many things but none of which really made much difference, and I don't have the money (or energy) any more to be chasing shadows, not that I wouldn't try new things now and again.

I think there is a large element of denial (or money grabbing from people who are selling something) in thinking that most people can get to the cause of their illness and fix themselves, especially through psychological means (as this gives comfort that we can basically think ourselves better).

At the end of the day no one really knows (though the psychological "explanations" don't made sense except with misdiagnosed people), though some people can find some things that help a bit. Some people are just lucky and get a lot better or just get up to a higher level of functioning. I know people who do all the "wrong" things, and some who also live in totally stressed out lives (e.g. in one case living with an abusive person), and who are a lot better than me.

It might give temporary comfort to think we can cure ourselves but it can cause great stress in the long-run. In my experience the people chasing cures and "determined to get better" tend to be more stressed (when it doesn't work) and also often don't pace properly so can make themselves worse in this way also. We cannot get better, or stop relapses, through sheer force of will. Though a little denial is useful up to a point too much of it is destructive.

 

[Dreambirdie]

Hi jenbooks,
I think, quite recently, the belief that I was hanging onto that they did "care" was finally hit by a missile and now there is just debris. I have been threatened with institutionalization several times and I doubt that's off the table.

They have absolutely and flagrantly (even to my previous therapist) suggested I either institutionalize myself or 'just commit suicide already.' The blinders have been removed and my own denial has been annihilated.

This is really awful. Just hideous.

So sorry you have to go through it.

 

[Valentijn]

I find the psychologization (is that a word?) of M.E. to be pretty ridiculous ... being abused in childhood or stressed out by work is somehow somatically manifesting as nearly identical symptoms in a ton of people who don't know each other?

I bet the people who believe that believe in Santa Claus too

 

[Dreambirdie]

I'm sorry but I find this psychologising ridiculous. You are suggesting she is hysterical (or possibly malingering, depending on whether she is consciously or unconsciously choosing to be sick). If screwed up psychology had a major effect on the illness then there would be a correlation between severity and psychological problems which there isn't (don't have the energy to look up the reference).

More generally, if psychological problems caused illness in general then the most screwed up would be sick and sickest, but this is not what happens. I think this sort of thinking is a bit like in the olden days some people thought illness was a punishment from God for past sins, or that the people who did best (materially) in life were being rewarded for being good. We still get echoes of this now with people thinking that if you make correct choices we will be healthy, and that we can have a lot of control over our health. So sick= bad/not living right, healthy= good/living correctly. It is comforting for the healthy to think like this but it is nonsense (not that I am suggesting making poor lifestyle choices either). Sometimes life is random and just sucks. I saw a good quote in a book on ME.

Hi Orla---

For those who have abuse issues, IN ADDITION to chronic illness, therapy and the insights gleaned from doing inner work can be helpful. Being subjected to ongoing abuse has detrimental consequences, both physically and psychologically. Abuse DOES cause severe stress reactions, even PTSD, which DOES affect the endocrine system, especially the adrenals, as well as the immune system. Abuse has negative effects on one's self worth and self-esteem. It damages one's psychological boundaries. It causes anxiety and depression. The effects of abuse linger LONG AFTER one gets out of the abusive situation, and make one more likely to attract abusive partners and friends, and to relive the pattern of victimization.

Getting therapy to assist one in the process of dealing with past abuse issues is beneficial to reclaiming one's emotional and psychological integrity. Having a good sense of self-esteem, having healthy boundaries, having good discrimination in making life choices, being able to stand up for oneself and speak out on ones own behalf, knowing one's self--one's strengths and weaknesses and limitations is always a good thing. That is the purpose of therapy.... to help one get there. This can also, sometimes, but certainly not always, help one's physical health...and if it does, then there is another added plus.

PLEASE NOTE: I am NOT saying that this means that ME/CFS has a psychological cause. But rather that removing ANY STRESSFUL FACTOR that may be contributing to the undermining of one's overall health will possibly give a measure of improvement to ones overall health.

I think you are taking the concept of "psychologicalizing" too far to compare therapeutic work with the thinking of "olden days.." that "illness was a punishment from God for past sins." It bothers me when people become so condemning of everything having to do with psychology, that they dismiss some of the benefits therapy may have/has had for some of us, especially for those who have grown up in abusive homes, and have needed therapy to recover from that.

 

[maddietod]

I've really enjoyed this thread, and we're veering into some very charged territory. All of the discussion has been interesting and insightful and heartfelt. Could we just move on from this current bit, before it turns into personal attack-defense? Because this isn't what Zoe's thread is about anyway.

 

[Dreambirdie]

I've really enjoyed this thread, and we're veering into some very charged territory. All of the discussion has been interesting and insightful and heartfelt. Could we just move on from this current bit, before it turns into personal attack-defense? Because this isn't what Zoe's thread is about anyway.

Great idea. I am with you on that.

I was able to find the link to the famous case of a child who divorced his mother, so that he could be legally adopted by his foster parents.
His name was Gregory Kingsley which he later changed to Shawn Russ. http://www.time.com/time/magazine/article/0,9171,976611,00.html

"In 1992, with the support of the Russ family, Gregory took steps to legally divorce his parents after deciding he now had a settled life with his foster family and did not wish to be uprooted again. He became known to the media as "Gregory K". On June 9, Judge Thomas Kirk deemed that Gregory had the same rights as an adult to fight for his own interests and ruled that the child could file his petition for divorce. On September 25, after a two-day trial that was televised, Judge Kirk ruled that Gregory had been neglected and abandoned by Ralph and Rachel Kingsley and terminated their parental rights before awarding full custody of the boy to George and Lizabeth Russ.[2] After winning the case, he was presented with a t-shirt that had the name "Shawn Russ" printed on it as well as the number 9 to show he was the Russ' ninth child."

I hope this set a legally binding precedent. The more rights abused children have, the better.

 

[Orla]

Hi Orla---

For those who have abuse issues, IN ADDITION to chronic illness, therapy and the insights gleaned from doing inner work can be helpful. Being subjected to ongoing abuse has detrimental consequences, both physically and psychologically. Abuse DOES cause severe stress reactions, even PTSD, which DOES affect the endocrine system, especially the adrenals, as well as the immune system. Abuse has negative effects on one's self worth and self-esteem. It damages one's psychological boundaries. It causes anxiety and depression. The effects of abuse linger LONG AFTER one gets out of the abusive situation, and make one more likely to attract abusive partners and friends, and to relive the pattern of victimization.

Getting therapy to assist one in the process of dealing with past abuse issues is beneficial to reclaiming one's emotional and psychological integrity. Having a good sense of self-esteem, having healthy boundaries, having good discrimination in making life choices, being able to stand up for oneself and speak out on ones own behalf, knowing one's self--one's strengths and weaknesses and limitations is always a good thing. That is the purpose of therapy.... to help one get there. This can also, sometimes, but certainly not always, help one's physical health...and if it does, then there is another added plus.

PLEASE NOTE: I am NOT saying that this means that ME/CFS has a psychological cause. But rather that removing ANY STRESSFUL FACTOR that may be contributing to the undermining of one's overall health will possibly give a measure of improvement to ones overall health.

I think you are taking the concept of "psychologicalizing" too far to compare therapeutic work with the thinking of "olden days.." that "illness was a punishment from God for past sins." It bothers me when people become so condemning of everything having to do with psychology, that they dismiss some of the benefits therapy may have/has had for some of us, especially for those who have grown up in abusive homes, and have needed therapy to recover from that.

Hi Dreambirdie, this will probably surprise you but I agree on the whole with what you are saying . But just to clarify what I meant, the original quote I was specifically disagreeing with implied that Zoe might be chosing to be sick as a result of screwed up family dynamics (that she wasn't ready to be well and free of her family, so she became sick in order to answer some deep seated need to be cared for by her family). This is what I disagreed with. It implied some secondary gain from being sick which I am really not seeing at all.

It remineded me a bit of something I heard a psychologicst say one day on TV. He asked the question , what happens when people get sick? And answered, they get people taking care of him. She he said that people were chosing to get sick (as far as I can remember he also included the injured in his ideas as well - they got injured on purpose basically ) as they wanted someone to take care of them. He did not qualify his comment in any way, he was claiming all people were getting sick for this reason.

I couldn't believe my ears. If nothing else it was ridiculous to think that everyone gets cared for who is sick, or gets cared for adequately, or better than if they were well. He was obviosuly taking the "there is no such thing as an accident" (reputed to be said by Freud) a bit too literally!

Anyway turns out he was probably projecting some of his own unresolved childhood issues onto every sick and injured person on the planet. His mother had been very sick when he was young and he ended up as a carer (which of course was not fair). He was probably still resentful or something.

But it is worrying that these sorts of ideas are out there and being promoted by psychologists.

About the point I made, obviously not very clearly , re the punishment from God/human failure idea. I think a lot of people do think we are failures as human beings for getting sick. There is a lot of emphasis now on "personal responsibilty" which ignores other factors such as genes, environmental and societal issues which contribute to poor health. I think this sort of thinking is a form of denial (also an excuse sometimes not to care for the more vulnerable in society). I think this is partly why we get so little help and so much judgement from society. I knew someone who had siblings who thought this way and it caused a lot of frustration for him, and they also were of no use to him in helping him (because it was his personal fault for getting sick and not getting better).

I agree that counselling is good to help people come to terms with abuse, or to talk through other problems with someone not directly involved in their life. I do suggest it to people if I think it might be of help. I have gone to counselling myself to help cope with the adjustments of being sick. But it had no effect on the M.E. itself (I did not expect it to either).

After reading what some of you have gone through with parents I think you guys are amazing :victory: and it is a credit to you guys that you went through what you did and not come out nasty/totally messed up human beings at the end of it all. I will shut up now as this discussion is probably more suited to the relationships section.

 

[Dreambirdie]

Hi Dreambirdie, this will probably surprise you but I agree on the whole with what you are saying . But just to clarify what I meant, the original quote I was specifically disagreeing with implied that Zoe might be chosing to be sick as a result of screwed up family dynamics (that she wasn't ready to be well and free of her family, so she became sick in order to answer some deep seated need to be cared for by her family). This is what I disagreed with. It implied some secondary gain from being sick which I am really not seeing at all.

About the point I made, obviously not very clearly , re the punishment from God/human failure idea. I think a lot of people do think we are failures as human beings for getting sick. There is a lot of emphasis now on "personal responsibilty" which ignores other factors such as genes, environmental and societal issues which contribute to poor health. I think this sort of thinking is a form of denial (also an excuse sometimes not to care for the more vulnerable in society). I think this is partly why we get so little help and so much judgement from society. I knew someone who had siblings who thought this way and it caused a lot of frustration for him, and they also were of no use to him in helping him (because it was his personal fault for getting sick and not getting better).

I agree that counselling is good to help people come to terms with abuse, or to talk through other problems with someone not directly involved in their life. I do suggest it to people if I think it might be of help. I have gone to counselling myself to help cope with the adjustments of being sick. But it had no effect on the M.E. itself (I did not expect it to either).

After reading what some of you have gone through with parents I think you guys are amazing :victory: and it is a credit to you guys that you went through what you did and not come out nasty/totally messed up human beings at the end of it all. I will shut up now as this discussion is probably more suited to the relationships section.

Thanks Orla, for your clarifications.

I am definitely in agreement with you as well, regarding some of the really bad therapies out there, which blame the victims for their illnesses. There are even some New Age types that believe we "choose" our abusive parents. This kind of psychological and spiritual know-it-all-ism reeks of a serious lack of compassion. Underlying it is the reality that chronic illness is very frustrating for those who would prefer to fix us quickly, and don't have the skill, the patience and empathy it takes to accept that we are EXTREMELY ILL and VERY DIFFICULT to cure.

I am also in awe of some of the people here, and how much they have been through, and how well they have handled it. REALLY AMAZING.

 

[Wayne]

The Importance of Gratitude

Most families don't even give that much. People whose families help them out with treatments year in year out are very rare and special. If your family gives you ANY monthly help, please be appreciative for what they do.

I have to agree with the above. I had NO help whatsoever from any family members over a period of many years, though I had my own severe financial difficulties during much of this time. Among many things I experienced, I lived out of my van for about five years total, somehow managing to do various jobs through temporary employment agencies. Thankfully, I was a good typist, as most manual jobs were out of the question.

Ironically, the times when things were the most difficult turned out to be when I feel I learned the most about the importance of gratitude. The littlest of things could become really big things to be grateful for, especially when everything else looked so bleak. I eventually came to believe that in order to receive more in my life, it was important I learn to be grateful for what I already had.

Zoe, when I re-read your initial post just now, I was struck by the amount of financial assistance you have received. Your brother and his wife in particular seems to have been there for you, even though it seems they do not fully understand your health situation. Though he apparently is indicating less financial assistance is in the offing, he still seems to be willing to do some kind of mediation. This indicates to me that he still cares.

I noted there was no indication of gratitude in your first post, despite the assistance you've received, though Im not implying you didnt have any. But I thought I would mention a few things I believe about relationships in general. Essentially, the outer communication we have with others is like the tip of an iceberg. The vast majority of our communication is the silent kinds; attitudes, thoughts, feelings, especially surrounding aspects of love, anger, resentment, etc. When we have thoughts about another person, it puts us in touch with that person. If we have very strong thoughts, it puts us in that much closer contact with them. I believe even the most coarse of people respond, whether consciously or unconsciously, to others inner messages of communication.

I cant help but think your brother may not be picking up a sense of appreciation on your part, and so is at a point of changing how he views the support hes given you. Perhaps if you told him how much you appreciate what hes done for you in the past, and express to him he should not feel obligated to continue this support, then perhaps things might shift. Giving somebody else freedom to do what they feel is right is paramount, even though it may not necessarily seem like its in our best interests at the time. If you dont feel comfortable communicating this to him verbally, or with the written word, then perhaps compose a letter in your own mind and send it to him inwardly. I think this sort of exercise can be very powerful for anybody who does it with sincerity.

Im currently on fairly minimal SSDI, but I do have Medicare, and am able to meet my most essential needs. I know some would look at this level of income as poverty level subsistence. But I actually have a lot of appreciation for what I have. Even though I did pay into the Social Security system which qualifies me for disability benefits, I never forget that its the people who go to work every day and pay their taxes who are supporting me. And I often thank them inwardly when I go out into the world and have them serve me in the smallest of ways; checking me out at the grocery store, and much more. Just a few of my thoughts for today. I hope none of this is out of line with the kind of feedback you may have been looking for.

All the Best, Wayne

 

[jenbooks]

I love what Wayne wrote. Well, generally, Wayne's posts always uplift me. And btw Wayne, I LOVE YOUR KEFIR GRAINS. Talk about spiritual. They are hardy little workers.

Anyway.

Orla, without rancor I think you misinterpreted my post and read into it, because of your own issues. I am not saying she chose to be sick. I am saying one aspect could be psychological--that she almost made it out, but she didn't, and now she has to work at it from an even deeper level.

I suggest taking a systems approach, to look at every facet contributing to an illness. We don't know how much of a role stress, psychology, family patterns, scapegoating, self-defeating patterns, genetics, genetic weaknesses, epigenetic weaknesses brought out by environmental exposures (infections, toxins), luck, help, bad luck, lack of help, and the greater deeper spiritual underpinning of life--how all these may play into our situation.

We can listen to our bodies, as best we can. Our bodies are talking to us. I just for instance read that chocolate WITHOUT milk lowers NF Kappa B remarkably. I eat either dagoba or sharfeen berger unsweetened baking chocolate every day. I've always said it was anti inflammatory and wasn't just "good" for me, it was medicinal and part of my protocol. Not with sugar and not with milk. So now research backs me up. NF Kappa B is a master regulator of inflammation and upregulated by certain pathogens. I got booted from a CFS list for suggesting such a trivial therapy was profound.

Kristin, I believe you are at a turning point that could be wonderful. Yes, I've been through it, I just don't feel comfortable writing about it because IT IS SO BAD. It is worse than other stories I've read, and I just don't want to go into it. However, I believe if you just let them go--although I do agree with Wayne, to really feel yourself into how much your brother has helped you, and to find the gratitude, might really shift the energy for your brother at this time, since it sounds like he has to jockey between two poles of the family, you and the others...anyway, if you just let them go, and grieve, you will find a turning point, where something deep in you says, "I want to live, I want to get better, I want it so much, I am going to do my damn best to save myself. I petition the beauty and strength in myself and in the universe--to find a way." And ideas will come to you. Helpers will come to you. They will not be your family. You do not want help from people with such mixed or negative feelings for you. Help will come.