What happens when you tell the truth?

[Marylib]

Am finding that as I come out of denial (and have less energy) I realize I have not always been totally truthful with my family and friends. Of course it would be easier if we had an illness that was not stigmatized by the ignorant. Easier to say "I have MS or Lupus or cancer or some such." But such is not the case.

Is it always better in the long run to tell the truth? To just up and tell people "If you want to see me, you have to come to visit a sick person lying in bed." Otherwise forget it.

I find that I have not so much lost friends and family, but I feeling more and more about cutting ties myself . It is odd that they continually expect me to be different, even though it has been years. Is this part of human nature? Is it a way of escaping the reality of life? Why do people prefer giving money to a "cause" rather than giving a listening ear to a person they are actually acquainted with who could use understanding?

What is this obsession with "positive thinking" that allows you to skip through the part about compassion and leap directly into "well look on the bright side?"

What do you think? Should I cut bait and enjoy the few wonderful people in my life who understand? Or will I forever regret not keeping up ties with my family "no matter what?"

 

[Sunday]

This is a really deep question; I believe each of us needs to feel our way to the right answer. I will say, though, that there are many answers between "fish or cut bait".

Either-or comes from the same folks who bring us that brittle positive thinking that refuses to look at anything else. It's all fear of death. That's basically what it is, my take. Fear of having to admit that we're just not in control, that life is bigger than that. CFSers are exhibit A in that department, lost in something we can't control, and our nearest and dearest can't do anything about that, either. So they just don't see it. They numb themselves to it, so they can go on.

They lose by this, I believe, as much as we do. I'm still working out how I'm social with people, how much I come out of the closet as a sick person; until now I though it was on a "need to know" basis, but as I went through months of very bad patch it became obvious that a lot more people needed to know.

I often feel as though I'm whining. I also often feel as though I'm on the fence, because I'm trying the active B12 protocol and have hopes for at least a partial recovery, though it's early days.

Even when I'm healthy, though (should I get the opportunity), I want to pay careful attention to where I put my energy, including the ways I spend time with people, and the people I choose to spend time with. So while I worry about losing connections from not having energy to maintain them, and while I find it hard to deal with people who don't know about or choose to blow off my illness, I'm glad to have some enforced practice in budgeting the way I spend energy with other people.

I use my intuition a lot about connecting with people - when and what and how often. For me, it seems to work best when I don't have a Social Plan but just pay attention to who seems to be on my mind at the moment. (Anyway it's tough to have much of a social plan when you don't know if you're going to crash!) I've also worked out a sort of tiered system for myself: there are days when all I can manage is a short email; on better days, writing a card or making a phone call; visiting in person is rarer because it takes a lot of energy, but I like to do some of it, mostly close by. I find socializing in small groups is a lot easier on me and generally more rewarding than large gatherings, though there are exceptions to that. I do connect more often to those I'm more comfortable with, but I also make an effort to keep in at least occasional touch with people I'm deeply connected to but who don't know how to take my situation. (If I'm honest, I don't know how to take my situation, either.)

But I can see how there might be circumstances under which it would make sense to just drift away.

Sorry this is so long and rambling. It's a meaty issue, and I'm brainfoggily pondering my way along, here. But my thought about your situation is maybe experiment with being a little more forgiving of yourself (for not being able to socialize like "normal" people), and a little more forgiving of your family (which is not to say you should pretend you don't have a problem to make them feel comfortable). And listen for what your intuition prompts you to do. I find the more often I tune into intuition, the less frazzled I get around this. One of the great gifts of brainfog, in fact, is that I've been forced to use my intuition. And often it does the job a lot better.

Yeah, well, until the next time I have an attack of depression and angst. And the beat goes on.

 

[Victoria]

Sunday,
I couldn't have worded my thoughts any better.
You have expressed my own feelings so well, that it is almost as though you have read them.
Victoria

 

[Marylib]

Oh darn

I just wrote a reply and it seems to be lost...gee, it was really brilliant too.

Oh well....

Maybe posts get lost if you take too much time writing them or something...

 

[gracenote]

being with chronic

Fear of having to admit that we're just not in control, that life is bigger than that. CFSers are exhibit A in that department, lost in something we can't control, and our nearest and dearest can't do anything about that, either. So they just don't see it. They numb themselves to it, so they can go on.

Thanks Sunday for articulating this so well. I think people feel so helpless around us. Ken Wilber wrote about being a support person (speaking of his experience with his wife's fight against cancer) and quotes a friend's description of this as "Nobody is interested in chronic."

Day in and day out, nothing really can be done about the situation itself . . . you feel pretty rotten; the situation just doesn't change. And sooner or later you find out that almost everybody not actually faced with this problem on a day-to-day basis starts to find it boring or annoying if you keep talking about it. All but your most committed friends start subtly avoiding you, because [ME/CFS] always hangs over the horizon as a dark cloud, ready to rain on any parade.

One's initial response, when a loved one is faced with terrible news, is to try to make that person feel better. And I am saying that is the wrong response, by and large. First, you empathize. The crucial point, as I began to see it, is simply to be present with the person, and not be afraid of their fear, or their pain, or their anger; to just let whatever comes up come up, and most of all, to not try to get rid of these painful feelings by trying to help the person, by trying to make the person "feel better" or "talk them out" of their worries.

I think this is why "nobody is interested in chronic," because you can't do anything about chronic, you can only be there. And so when people think they are supposed to do something to help you, and find out doing is of no help, they're at a loss. What can I do? Nothing, just be there. . . .

Found in On Being A Support Person by Ken Wilber. (Also in Grace and Grit.)

Not only are we impacted by our illness and required to dig deeper and find meaning and strength in its midst, but those who love us, also, need to take this journey. But how hard it is. If I had not been forced over and over, year after year, to face my own despair, I would find it hard to stick around myself.

Questions of friendships and family are so very complex. At times, for me, these broken connections are the most heartbreaking symptom of being ill. I'm weeping as I write this. I still haven't figured out how to find my place within the world of the healthy. Only a few non-sick people have ever really tried to join me where I am. And I don't know how to help them to help me to make this connection. And yet I know, I really know, that I could be a precious addition to their lives if they could only slow down enough to walk with me for awhile, and be brave enough so we could confront these fears together.

And Marylib, I heard your message. It came through anyway. And it was brilliant!

(Some of these ideas are being very eloquently discussed on the "dating" thread.)

 

[MEKoan]

I just want to add that these problems are not unique to ME/CFS. At one point I was diaguessed with MS (after years of being diaguessed with Lupus, the usual drill) and when I had that diaguess, I spent some time on MS boards.

The people on MS boards who suffered from crippling fatigue and cognitive problems faced all the same challenges we face: people didn't understand; friends and family experienced compassion fatigue; many friends just disappeared. It was just like this.

In fact, people with MS were told to get a grip, think positive thoughts and try this, that and the other herb, just like we are.

They were also told that MS didn't cause their symptoms -- they were depressed and not experiencing fatigue as a result of their illness. Or legitimate gripes were put down to MS effecting their reason and affect.

This is not some special hell just for us. This is what happens when one has a chronic, disabling, hard to grasp illness. People have no frame of reference. They don't get it.

That's just the way it is.

peace out,
Koan

ETA I just saw Grace's great Ken Wilber post. The advantage we have is that people need not flee us because we remind them that the axe will fall. In fact, once we find our feet, people can spend time with us because we remind them that sh*t happens and one can go on in a graceful way. I hasten to add that I've had 3 decades to make peace with this -- it took a long time and a lot of help.

 

[MEKoan]

And yet I know, I really know, that I could be a precious addition to their lives if they could only slow down enough to walk with me for awhile, and be brave enough so we could confront these fears together.

This is it, isn't it. You have much to give and to teach. When they are ready, they will learn. Do everything you can to increase your happiness. Then, when they are ready, you can share that, too.

You will be a great teacher.

peace

 

[MEKoan]

If I had not been forced over and over, year after year, to face my own despair, I would find it hard to stick around myself.

Brilliant. This is the only way to learn to deal with despair. We know something that not everyone knows: how to withstand despair.

That is real strength and very precious. We can share that and teach that.

peace out

PS My cognition is in a shattered state just now so forgive me for repeatedly quoting same message - I can't seem to take it in all at once.

 

[susan]

Keeping friends and family

This is a bit of a rant. I cant express any better what you have all have said so eloquently. In the last week I got so moved by a friend of a friends 30 yr old daughter, just finished her PHD and ready to take up the dream job in London. Bingo....full blown CFS now 18mths.

Mum is crying out in desperation at 64, no one to listen to her, her very own siblings have deserted the sinking ship...good "friend" of 48 yrs pulls the plug and not even visited the house. Of course the the girls friends went up in smoke too.

The injustice of ill health got me as my niece has just experienced this same lack of care with her 3yr old daughter having liver cancer. I penned a long letter to journalist who does human interest stories. I queried whether this was modern day phenomena. I truly believe it maybe.

I am now into middle age and I can remember both my parents talking about the suffering of relatives and neighbours and giving them assistance. No one those days was a stranger to death like we are today. They saw many children die in those times without vaccinations, miles from Doctors.

Society worked more on collective happiness, expectations were lower. There was very little "meism" as it was pretty tough trying to survive alone without family and friends support as there was little in the way of Welfare,

.
Now we hear people talking about "my lifestyle" and I think this is the very basis of what is bringing about a demise of a caring nurturing society and we are left to strangers coming into our homes to care for us.

All this was recently brought to my attention as I watched 2 brilliant Australian film productions of life in earlier times, neighbour helping neighbour, No TV then, people dropping by on foot mostly to play cards to chat. In one particular home, were disfigured First World War vets that the lady of the house had brought into her home and nursed before sending them on their way. Everyone knew their turn could be next with diseases and Wars

I personally think everyone to day is confused about the meaning of happiness. They think they have to chase a rainbow to achieve it, thru material possessions, exotic holidays etc in other words self obsession. The Dalai Lama said "happiness is an Art...it has to be learned" You have to know suffering before you can know true happiness. So why would so called friends want to contaminate their view of the world with facing your "illness" and their own mortality. This screws up their world view.

What is pushed at society these days as happiness is just spin. Facing our despair and coming thru yet again and again, makes us so appreciative of the simple things, the first sign of spring, the first snow fall, a day without symptoms, everything has greater meaning. It is the constant coming back yet again and again from the precipice that gives us more and more strength and resolve to face adversity.

I know now I chose wrong friendships from the outset....always listening,and helping, caring for someone, part of my career. When my turn came, they all walked out of my life. They were attracted to me because of my emotional strength and now they resent I am no longer available for them to vent their spleen. Because i cant create happy interludes, I have to be resented as I have "done " this illness to them.

I have made a decision not to discuss my illness at all now....I am not my illness. I need people in my life on the periphery.....If I get well again and go out into the world, I dont think I will ever gain enough heart to trust friendship again. I think this time I will be entertained instead. Or maybe I will be a voyeur in the relationship, just watching before I make my strike.

 

[MEKoan]

Beautifully said, Susan!

Thank you!
Koan

ETA Please forgive how incredibly presumptuous I am about to be but I can't help but think you'll keep going on your path and you will come to a place where you will trust again... on new terms, with much wisdom.

 

[Marylib]

Susan

I hear you! Beautiful -- thanks.

 

[bee33]

Am finding that as I come out of denial (and have less energy) I realize I have not always been totally truthful with my family and friends. Of course it would be easier if we had an illness that was not stigmatized by the ignorant. Easier to say "I have MS or Lupus or cancer or some such." But such is not the case.

Is it always better in the long run to tell the truth? To just up and tell people "If you want to see me, you have to come to visit a sick person lying in bed." Otherwise forget it.

I find that I have not so much lost friends and family, but I feeling more and more about cutting ties myself . It is odd that they continually expect me to be different, even though it has been years. Is this part of human nature? Is it a way of escaping the reality of life? Why do people prefer giving money to a "cause" rather than giving a listening ear to a person they are actually acquainted with who could use understanding?

What is this obsession with "positive thinking" that allows you to skip through the part about compassion and leap directly into "well look on the bright side?"

What do you think? Should I cut bait and enjoy the few wonderful people in my life who understand? Or will I forever regret not keeping up ties with my family "no matter what?"

You bring up a very interesting and important point. I know I myself have definitely resorted to denial and pretending there is nothing wrong in order to get past people's judgmental nature.

I've actually found that people are more accepting of my limitations when they think I'm just a flaky screw-up who can't be bothered to keep appointments. When I've made the mistake of telling someone that I missed am event because I was too sick, or that I can't predict how well I'll be feeling on any given day, so I can't make a commitment, they were often contemptuous. I have had people actually snort.

My family is wonderful, and my parents support me financially, but we don't really talk about my illness. They accept that this is the way I am, but it seems more like they've accepted my peculiar inability to engage in the world as is, at face value, without really knowing much about how my illness affects me and why it is that I can't do normal things. Until XMRV was discovered, I wondered how I would explain to my 10 year old nephew why his oddball aunt doesn't have a job if the question ever came up. Now I feel like I have a more concrete explanation, and it is comforting.

So, as far as always telling the truth, I guess I have been in the "no" camp, both toward the people who love and understand me and the strangers who are suspicious and dismissive.

"Positive thinking" is in my view a corrosive philosophy. Barbara Ehrenreich has a new book on the topic that people here might find interesting: Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America. (I haven't read it yet, only interviews and reviews, but I love her work and hope to pick it up soon.)

Personally, I have never been an adherent of the positive thinking camp. What I find extremely liberating is unvarnished truth-telling. My view on disability is similar to Jim Knipfel's, who is blind and has written some caustic, irreverently funny books, not necessarily about his blindness, but it's an inescapable fact of his life that comes up a lot in his writing.

 

[Victoria]

"Positive thinking" is in my view a corrosive philosophy. Barbara Ehrenreich has a new book on the topic that people here might find interesting: Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America. (I haven't read it yet, only interviews and reviews, but I love her work and hope to pick it up soon.)

Sounds like a very interesting book, Bee33,

I'll be interested to hear your thoughts if/when you get around to buying/reading it.

Talking of positive thinking, reminded me of a lady who works in the office department next to mine.

She is a delightful person & I really like her. I like her manner & everything about her character & way of expressing herself in general. She is very good company, BUT........

When I revealed that I have FM (& other chronic health problems, including sciatic pain from constant nerve compression in my lumbar spine) & couldn't think of going to "such & such" a work function, I wouldn't be able to stand that long, let alone carry a social conversation & think clearly, she said she had Fibromyalgia some years ago & just used positive thinking & exercised, & just used mind over matter & she didn't have Fibromyalgia now.

I bit my tongue & held back from commenting out loud.

It really, really annoys me when people infer that I should just use positive thinking & a few exercises to overcome my pain/fatigue.

If she really, really had severe overall pain years ago, she would know that it is not that simple. And secondly, she has no idea of the other health issues that complicate my life.

I was tempted to blurt out, I think I AM using positive thinking & mind over matter, walking to work & keeping up a full time job (when I'm in constant pain, often fatigued, can't think straight, can't see well, can't hear properly, have memory lapses etc).

I call my actions, the perfect example of will power & positive thinking. I have, at times, achieved miraculous results in an often stressful, demanding job at work in recent years, but thinking away FM 100% is completely beyond even my great powers of mind control.


Victoria

 

[Marylib]

Positive thinking

I heard an interview with Barbara whatshername (sorry!) too.

Victoria -- all I can say about your post is ...right on.

 

[gracenote]

interview with Barbara Ehrenreich

If you're interested in watching a phone interview with Barbara Ehrenreich, here's a link. It's about 45 minutes long. She talks about her experience with cancer, and how she was "supposed to" think, feel, and act about it, which of course she most definitely didn't. I think it's quite fascinating and enlightening.

Hanna Rosin and Barbara Ehrenreich Discuss Positive Thinking

 

[Victoria]

Gracenote,

Unfortunately I was unable to listen to the interview (on my computer at home).

My home computer & skills leave a lot to be desired.

But I did read the book review - and yes, I'd like to read the book. The review was rather mixed, but sufficient to spike my curiosity.
I have printed the book title & put it in my pile of things I want.

In the meantime, I will try & listen tomorrow at work (lunch break of course).
My work computer does almost anything & everything, thank goodness.
(and of course, haveing 24/7 unlimited access to the internet was the reason for my delaying a home computer & internet connection)

thanks for the link
Victoria

 

[Dreambirdie]

Barbara Ehrenreich on the Daily Show with John Stewart.

http://www.thedailyshow.com/watch/wed-october-14-2009/barbara-ehrenreich

 

[sarahg]

I've always been one for truth-telling. This probably comes from my very poor abilities at lying and at covering things up. I pretty much suck at it, really. The way I see it, if people don't like what I have to say, they can react to it however they want. They can think bad things and walk away, they could say offensive things...but it cannot be said that I did not do my best to get my point across. And I can't be hurt by offensive comments for long because either they come from ignorance or malace and I have neither the time nor the energy to ruminate on either. I do often make a point of distancing myself from people if they don't want to hear or understand what I have to say and choose to continue being comfortably ignorant. This doesn't mean that I go out of my way to push things into people's faces by any means. And especially to strangers it is often better to extract from the situation and to just not bother explaining anything. But if somebody asks or somebody makes a comment about my behavior or state of being, all I can do is explain myself and leave it up to them. This is complicated by having a brain that does not want to function at times, and when my brain is really screwy I have a much harder time with this. But I try to maintain the general principle of this.

By the way I adore Barbara Ehrenreich! Nickel and Dimed is one of my all time favorites, the follow-up book was great too ( I can't rememmber the name)

 

[Dreambirdie]

lessons in truth telling

My first big lesson: When it comes to all matters related to CFS, there are people who DESERVE the truth and people who DO NOT. I am now willing to wholeheartedly embrace my role as the "queen" in charge of that final judgment, and to follow through accordingly. Oh yeah, baby!

My second big lesson: The only person that you really HAVE TO tell the truth to is yourself. And that is not always as easy as you may think.

 

[jenbooks]

I haven't seen the truth get me very far--it usually ends the "relationship", "friendship" or whatever. I am articulate and blunt--I simply refuse to be blamed for my situation, or for my heroics to be dismissed. Sometimes I just walk away, sometimes I confront and then either they or I walk away.

I just don't find people can handle the truth. I'm not sure why. Ken Wilber's essay, that someone posted, does address it very well. People want to be able to help--and they don't want to deal with a chronic situation that scares them and where they can't do anything but actually be really present with you.

I have walked away from:
"You don't know how to protect yourself so you sat in a tick yard"
"You brought this on yourself with your vitamin IV's"
"You need to examine why you called something like this into your life" (Wilber addresses this kind of crap)
Etc.

Just yesterday and today I had it from an editor/qua "friend" I've known for 25 years. I suspect he's going through his own tough time personally and financially but a month or so ago he decided to lay it on me, that I have been in NY too long and I could throw my belongings in a car and leave today and be a better person for it but I won't...

We had had discussions before about me leaving, and possibly going to the desert, but I decided on Atlanta for many reasons--including my bf would rather be there among green...because the altitude is not punishing...because I have a holistic doc there I know and who likes me which is major major major...because I have af ew friends there...because it's sunny and you can make Vit D all year long just by being outdoors...because it's warmer and I do badly in winter...because its at the foot of the Appalachians which are lovely...because it's an airport hub which is very useful...etc etc. Anyway in one conversation back then he was truly repelled by the idea of me moving to Atlanta. It's not where *he* would move. He thought I should go to a small town in the desert somewhere.

So anyway, in an email, I explained in some detail the exact nature of my specific health challenges in the last year, one after the other, as well as the fact that I'm in a relationship and I've had to be patient as he considers moving and readies himself etc.

What I got back was a message, a month later, that I should write a book called Escape From New York, and how hard it is, and it could be a movie too...and that he hopes I'm "well". Huh? If he read my emails he might as well hope I'm on Mars.

I wrote back explaining my reality and perspective once again...and how much manuevering financially, medically (doctor care) and personally (boyfriend) it takes to even try to get out of here--not to mention MCS making most places I will look at unliveable etc...yet I am taking small slow steps in that direction...and that I don't want to write a book about leaving NY...

I was very clear about my realities. They're supremely difficult but I am hoping I can manage them over time and get to a better easier healthier lifestyle. Anyway, I got another email back telling me literally, "You can whine about your fate or you can rise above your victimhood"--and since he thinks I'm an "exquisite" writer I should be writing about my escape from NY. Yeah he told me that again. And how I'm trying to "beat this thing" or die trying...maybe like the Terminator...and maybe I'll end up alone in the desert but how I shape my story to myself and others is the point. Apparently I can empower others...or whine.

So my reality is a whine. And all that I've done to save myself is a whine. And not being able to throw my schitt in a car and leave everything behind like a carefree 20 year old is a whine. And I'm playing victim. And I'm not writing the book I should. And I'm not living where I should and neither am I going to the desert like I should...apparently alone.

I'm telling y'all this stuff is not uncommon in my life. I don't really quite get it. Why are others so pissed? I fulfill my obligations to them, so far. If I take an assignment, I finish it on time. I've been nothing but courageous in my view. So why do I get blame and judgment?

I know it's not just me. All I'm saying is people really hate the truth.