Lies My Clinic Told Me

[MooseMom]

Well, it's not just the government; it's also the insurance companies.  Why are D patients forced to go onto Medicare after 30 months of D?  Why not make it 40 months or 50 months?  If people are so happy to have "the free market" dictate our medical care, then let the big insurance companies foot the bill and have government mandate that no insurance company can put a cap on benefits.  Reduce the time that D patients have to rely on Medicare/government/taxpayers and increase the time that ins cos get to pay for D.  I have private insurance, and the ins co gets paid big premiums, so why not keep me off Medicare and let my ins co pay for my D until I reach 65? 

[MooseMom]

If dialysis is a "part-time" job, when is my vacation?

You slacker.  What makes you think you are so entitled?

[cariad]

I can see why people bristle at the job analogy, but I see it as a suggestion on how to make dialysis easier to tolerate emotionally. It reminds me of a director I worked with back in my theatre days, he would have the actors perform all of these warm-up games (play your character as an animal, improv your character in this same situation 10 years ago) and then he would end every exercise with "If that helps, great, if not, throw it out."

In terms of talking to counselors, it helps me to keep in mind that they do not live carefree lives themselves, and even if they did understand what you are saying on a personal level, most would consider it grossly unprofessional to say so. They are (supposed to be) there for you, they need to hire their own counselor for their own issues.

Perhaps the best psychiatrist I ever saw had a philosophical approach. She spoke of Aristotle and some other thinkers who escape my memory at the moment, but in the end she reiterated what I already knew deep down  You have to get to a point where you can say 'I don't want to die, but if I do, I'm OK with that.' Of course jobs can be harmful to one's health, can be physically painful, can be so stressful you don't know how you are going to make it through the day - but that's not really the point. If the analogy is not helpful, throw it out.

I don't really agree that transplant gives a person more control over risks. Perhaps more control over your time, but that's assuming no complications. It is rather a crapshoot what the anti-rejection drugs will do to people. Some (like me) have a relatively easy time of it, others, like the woman who was first to undergo a tolerance trial, found themselves in a wheelchair at age 18 because of excruciating skin infections on the soles of her feet. Kidney failure can be such a nightmare no matter which way you go, but the hope is that each person can find the mindset that allows them to suffer the least psychological damage from it.

Since I was only on dialysis a brief period as an adult, I don't have much to contribute to the 'lie' topic. However, I do remember having a really interesting discussion with a tech about NxStage and then he ended with 'but you don't have to know all this'. I guess in a sense he was right in my case (though I wanted to know), but I hope he does not say that to every patient he sees, because they really should all know about their options.

[jbeany]

Really, pretty much any sentence that begins with "All dialysis patients..." has got a lie in there someplace.  No matter how much they try to squeeze us all into cookie cutter shapes, we all react a little differently - to the meds, to the process, to the diet, and to the stress.

[Meinuk]

Cara really said this much better than I could, but I have a rant bubbling to come out....

Look, we don't die from dialysis.  We die from End Stage Renal Disease. Dialysis is NOT the enemy. Nor are the people who provide it.  They may be undereducated or uninformed, but aside from  one stray nurse in Lufkin, Texas (accused, not convicted), I don't think that anyone woke up this morning thinking "I'm gonna kill me some patients today." Because of the for profit business model of dialysis today, they are over worked, underpaid and under educated as a whole.

But that is the society that we live in.  Not the dialysis industry.  We as a nation allowed this to happen.

All of the staff that treat us are people.  They are not perfect.  They live, they laugh, they have a job.  They will NEVER know what it is to walk in our shoes, nor will our therapists, pastors, priests or Rabbis.  Nor our families either. They will never care about ME, as much as I care about ME.  And I would be at fault to expect them to.  After all, I don't care about them.

Our government does not have it out for "us". Seriously, our government can't balance a budget - so you really think that they can conspire to kill people?  They just don't care.  They want the next donation, the next vote or the next sound byte for popularity.  If we meet any of those needs, we may get a token notice, but aside from that, we are "Budget Dust".

There is no vast conspiracy to do me in, nor to do any of my peers in. That would take a lot of effort and planning.  Not our Government's strong point.

It is worse than that. and we have to wrap our heads around the core issue.  NO ONE CARES.  We care about ourselves, our families and the people that we love, and we expect everyone to feel the same that we do.  They don't. Let them off the hook.  Expect them to do their jobs to the best of their ability and acknowledge that we are fighting for our lives.  If we could realize that they are only doing their job, sometimes poorly, life would be much easier, and we would stress less.

We need to adjust our expectations considering the current climate.  That technician or social worker who is saying stupid things to you?  Maybe they are just a person who says stupid things.  I'll bore you all and talk about my cousin Cathy (not her real name), she is an idiot who has said some of the most outrageous things ever.  We would laugh and avoid her at all costs.  But sometimes, you had to be around her, after all, she's family. Hey, I took her wedding photos.  Cathy could be your dialysis technician, or your nurse or heaven forbid, your social worker - that would make her no less an idiot - well trained, but prone to saying the stupidest things. Don't you think that I wanted to yell at the mentally challenged girl who packed my groceries with the icecream next to the roast chicken?  Really, would it have done any good?  The highlight of her day is to pack groceries and say hello to customers, then she is back to the group home to watch TV with her friends - with no thought or memory of me, or my melted ice cream. We spend far more time stewing in these social affronts than the affronters do.  They say or do something stupid and then move on.

The world is full of people who are just getting by.  Yeah, they aren't the optimum that we want to take care of us, (because we are the most important people in OUR world) BUT, they need a job, and we have no option but to interact with them. We're forced to, we need them. We can either get angry or we can try to explain what they are doing wrong and hope that they can take it on board, and do a better job.  Yelling at someone does not correct them.  Nor does telling them that they are an idiot.  we have to suck it up, take the high road, and try to educate them.

Most of the dialysis industry is corrupt and out of control. The government is out of control.  Life is out of control. Our job is to find a way to survive and thrive.  To complain when we need to, to support each other when we can, and to try to get through this by any means possible.

The ideals that we carry around in our heads are just that, ideals.  Only in the most extreme cases is there a personal vendetta, and in most cases, when some one is trying to speak with you and say, "think of it as a part time job", they are innocently trying to give you a tool to cope with the fate that life has handed you. It is a tool that worked for some - I've written about it as a coping mechanism in the past, and I know that people in the industry have quoted me, so it could be ME that said to you "Think of it as a part time job" - it sounds different when one of your peers says it, doesn't it?.   We need to teach them compassion by SHOWING THEM COMPASSION.

It sucks that they are healthy and they will never know what it feels like, but none of us get out of this alive.  Just like me, my idiot cousin Cathy will die one day too. Only my death certificate will say "Complications secondary to ESRD" and hers will say "Blow drying hair while in shower".

One of the most irritating conversations that I have ever had was with an interventional nephrologist who decided that he needed to lecture me on the dialysis industry, catheters and what it is like for "poor dialysis patients".  He didn't care who he was speaking to, he just wanted to hear his own voice and tell me, the woman on the other end of the phone just how important he was to the world of dialysis.   After ten minutes of blather, I told him that he was inconsiderate, arrogant and should always consider who he is speaking with when he chooses to exaggerate his accomplishments. Then I hung up. He wasn't worth my time.

Getting angry about bad advice should only last as long as the bad advice did.  Any longer, and you are building up a grudge, and I am sure that you have better things to be angry about.

There are ways to effect change.  If you are offended by something some one says, try to be reflective about it.  These are people.  Do you really think that they have it out for you?  Or are they simply uninformed?  On the whole, these are not highly paid or highly respected people that you are getting annoyed with.  Seriously, consider the source. For technicians in NYC, they get paid just a few more dollars and hour than McDonald's counter people. Had they not passed the test, instead of "Treat it like a part time job" they could be saying "You want fries with that?"

[monrein]

Very well said Meinuk, and I very much agree with you. 

[Meinuk]

The rant is still here, and I am going to even deeper.  This is way off topic in a sense, but it is my POV.

The worst part about this disease is the fact that we face it alone.  Married or single, this is our disease, and we are alone in out thoughts, feelings and symptoms 24/7.  That is isolating, crippling and soul crushing.  No one that sees us knows the inner conflict.  For me, my rage is couched in humor.  My terror is wrapped in control, and my trust is non-existent.  I am cynical, jaded and bitter on the inside.  The people who love me know this and still choose to love me.  For that, I cherish them. But it took me 45 years of living with CKD to come to that self realization. And 45 years to learn to stop lashing out at others because I was in pain.

One of the easiest things for me to do was to accuse people of being insensitive to me on purpose. "conspiracy theories"  Because when I felt that they were hurting me on purpose, I was still the center of all thoughts and actions.  It took a lot of introversion and strength for me to realize that not only did they not affront me on purpose, they seriously don't care.  It hurt more to realize that people don't care about me or my feelings, because that drove home the reality that I was alone. Soul crushing.

But then, after a lot of wine and a lot of self pity, I started to look at others around me in a different light. Could other people feel the same way that I do?  I like to think that at 45, I am starting to learn compassion.  But first, I had to have compassion for myself.  I had to forgive myself for hating this diseased body that I am living in.  It is the only one that I am going to get, and it is being kept alive by spare parts.

Every day, when someone offends me, I have to remind myself that I am giving them that power.  They are not taking it.  They don't care.  It makes me sad, and it makes me humble.  But I'll take sad and humble over angry and ready to snap. It takes too much energy to be angry.  I've got better things to do with my time. (all bets are off in traffic though - Road Rage is a divine right)

I just wrote paragraphs of psyco babble.  Cousin Cathy would shrug and say "Sh*t happens" - maybe she's not such an idiot after all.

[MooseMom]

The realization that the vast majority of people you come into contact with do not care about you is actually very liberating.  That's the reason I very very rarely feel insult or hurt by the actions of others.  They have their own lives, their own fears, their own uncertainties, and they don't have the time nor the energy to "care" about me, and I'm fine with that.  In the past year, I have had two people who I trusted or cared about pretty much tell me that they didn't care about what I was going through, and for whatever reason that I don't quite understand, I don't take it personally.  I just don't.  It surprises me how completely disdainful they were, but it doesn't hurt me one iota.  I just don't care. 

We are all alone with our fears and our terrors, no matter what the circumstance. 

Yes, I threw out the job analogy because it was intellectually lazy for a "professional" to say something like that.  As a patient is crashing or is being infiltrated for the fifth time, I doubt that they are thinking, "This is just a job" as they lose consciousness and that that thought makes them feel better emotionally. 

Perhaps it is true that transplant doesn't give you more "control", but you cannot deny that for most people, it is the goal, and we all talk about the "miracle" and the "blessing" of transplantation despite the risks.  People endure a lot of psychological and physical hardship just to get on the list, nevermind getting a transplant.  I would guess, and I may be wrong, that most people who have had the "miracle" of transplant wouldn't willingly go back to dialysis.  That doesn't make transplantation a tea party by any means, but it's not as burdensome as dialysis.  Getting this particular "promotion" is merely a function of luck.  It is not a reward for a job well done.  It is just luck.  Again, the job analogy is faulty.

I never needed renal disease to teach me compassion, and that's why I'm angry.  I've never believed that I needed to get sick in order to be taught some cosmic lesson about courage or bravery or empathy or human compassion because I never believed I was truly lacking in those things, so why make me go through ESRD?  It's pointless suffering. 

[MooseMom]

One last thing I'd like to mention, and it may sound really Pollyanna-ish, but so what?  More often than not, it pays to be nice to people.  You know how we complain that no one cares?  That technician or that nurse is probably thinking the same thing about his/her own life.  That other person has probably gone a long time since someone did something nice for them out of the blue, said "thank you" or expressed any interest at all in what they might be doing, thinking or feeling.  That lady who is on the other end of the phone, trying to schedule you an appointment might have a kid with cancer or a husband who's a drunk.  She might be suffering in silence just like you are.  She's probably thinking, "No one cares that my life is crap."

A couple of months ago, I went in for my monthly transplant blood draw.  The phlebotomist was a Polish lady who'd I'd been seeing once a month for a long time.  On this particular day, she seemed agitated and sad.  I could have ignored it and gotten out of there asap, but I took the time to ask her what was wrong and if I could help.  I figured that the worst that could happen would be that she thought I was being intrusive, but it was worth the risk to just be nice.  She thanked me but wouldn't tell me what was going on, so I just gave her a hug and left.

The next month when I saw her again, she told me that she had had a miscarriage...the words just came flooding out.  She told me all kinds of personal things, about her plans, her other child, etc.  There was nothing I could do to help her in her life, but I was nice to her, and she was grateful.  I could do no more than listen, but just that small thing established a human connection for just a nanosecond.  It doesn't take much effort to be kind. 

While it is true that chronic disease is a very isolating experience, the irony is that suddenly your life is invaded by a whole army of people you didn't invite in.  The docs, nurses, techs, office support people, delivery people, the list goes on.  It's a lonely life filled with PEOPLE!!!  So the risk of experiencing stupidity or inefficiency or disdain is great.  I personally don't take much notice and don't need them to hold my hand, but I try very hard to be nice because you never know when it might be reciprocated, and to have someone just do something a little nice for you makes you feel really good.

[/pollyanna]

[monrein]

Not Pollyannish at all MM.  Life isn't fair, it can be brutish and really difficult and whatever we can do to create little islands of connection in the world is worth the effort.  Most of us are quick to take offense and to wish for understanding but slow to look within for compassion towards others about whom we make all kinds of assumptions.

I very much agree with what you've written too and I'm so looking forward to meeting both you and Meinuk in Vegas.

[HILINE]

no one told me lies. the reason I go to dialysis is I want to live   

[cariad]

Yes, I threw out the job analogy because it was intellectually lazy for a "professional" to say something like that.  As a patient is crashing or is being infiltrated for the fifth time, I doubt that they are thinking, "This is just a job" as they lose consciousness and that that thought makes them feel better emotionally. 

Perhaps it is true that transplant doesn't give you more "control", but you cannot deny that for most people, it is the goal, and we all talk about the "miracle" and the "blessing" of transplantation despite the risks.  People endure a lot of psychological and physical hardship just to get on the list, nevermind getting a transplant.  I would guess, and I may be wrong, that most people who have had the "miracle" of transplant wouldn't willingly go back to dialysis.  That doesn't make transplantation a tea party by any means, but it's not as burdensome as dialysis.  Getting this particular "promotion" is merely a function of luck.  It is not a reward for a job well done.  It is just luck.  Again, the job analogy is faulty.

I never needed renal disease to teach me compassion, and that's why I'm angry.  I've never believed that I needed to get sick in order to be taught some cosmic lesson about courage or bravery or empathy or human compassion because I never believed I was truly lacking in those things, so why make me go through ESRD?  It's pointless suffering.

I am sure we could debate the merits and failings of the job analogy all day, but what would be the point? I imagine the cop who is shot is not thinking 'Well, at least I'm getting paid, so it's OK if I die..." I think it would have been unprofessional for the therapist (are we talking about a psychiatrist or psychologist?) to not mention the job analogy. She does not know if you are an Anna who will take that analogy and run with it, or an MM who will think there are so many holes in that analogy I don't even know where to start! You are both right! As for the 'promotion', now you cannot tell me that you've never seen the idiot who chronically stuffs everything up get promoted, (even elected president). Unfairness permeates every aspect of life.

It really puts me off to see one person's suffering compared with another. There was an IHD member once who was always angry, mostly about getting old - he started dialysis in his late 60s. I bit my tongue when he would lash out at me randomly (he did this to many) but to me the analogy that popped into my head was "complaining about being too old on a dialysis site where kids die is like going down to skid row and complaining about having too much money!" The idea of getting to live essentially one's entire life without having to go on dialysis is a luxury I will never know. Does that make his suffering less than mine? No. That is what a friend used to call 'the small part of myself' talking. Transplant is the goal for many, even when it comes back to bite them, and it does. It was the goal of my parents for me - I had no say in it the first time, and no explanation of what was going on.

Yes, I agree that it pays to be kind. I also think it feels better to be kind. What I was trying to say, and what Anna seemed to be saying, was that you don't know what that other person is going through, maybe she IS in fact facing kidney failure. When I mention kidney failure (which I do not do very often) I find that many people have a kidney failure story to share. It is not an uncommon condition. The last psychiatrist that I saw, I went to just to have a place to sort through my issues. I had been told by the horrible transplant social worker to go see someone, and I did, thinking that if I had to, I could always say to the social worker "All right, fine, she will send you a letter saying I am stable enough for transplant." It never came to that. Sometimes I wish it had, (small part of myself about to speak again) because I really disliked this social worker and I would have had the following story to tell: So, I went to a therapist, as demanded. I saw her several times over summer, then when your lovely transplant team flatly told me that I had been kicked out of the trial with no explanation and no one who would talk to us for a full week, giving me plenty of time to lie in bed in tears contemplating how I was going to kill myself, the psychiatrist's office called to say that she had to cancel my appointment for later that week. No big deal there, I really did not feel like interrupting my sobbing to talk to her, even though I knew I probably should. Then when the whole mess got sorted out and it turned out it was just a bewildering miscommunication between the surgeon and clinical coordinator, I forgot everything about the psychiatrist - for three months. Then the first post of the New Year arrived, with a letter from the psychiatrist saying she was dying of cancer and what a pleasure it was to have the privilege of working with all of her clients. Well, I decided I couldn't let someone die without telling them what they meant to me, so I forced myself to compose a thank you note and kept her letter to shove in your face as proof that I went to see someone. Thanks ever so much for adding that bit of trauma to my life. This is totally what I needed to face 10 weeks before my transplant.

That psychiatrist probably did not say only helpful things. She tried. I think people do care, actually, I am convinced of that, so while you find it liberating to realise that they don't, I would find life terribly bleak if I truly believed that. I cannot entrust my life to people if I think they do not care. The wonderboy does care - how many times have I called or emailed him only to get a response moments later, often late at night. My husband cares. My children care too much. My friends care. The silly little receptionist who calculated how old I was when I told her the year of my transplant and started to get emotional over the phone, she seemed to care. She was the one who told me it would be alright - a ridiculous thing to say, but not for lack of compassion. The anthropologists who tell their students about their mistakes, sometimes coming to a tragic end, they care. I see caring and compassion all around me - no, that does not mean that people change their plans for me, or donate a kidney, or start their day saying "what can I do for cariad today?" but I still feel that people, within the limits of their situation, want to help, want to see good things come to me, and I feel the same toward them. The surgeon - any job of that nature REQUIRES professional detachment, or it will eat you alive. I asked Gwyn once if he thought our former GP cared about what was happening to me. He said "He cares, but it is in his best interest not to." and I think that is it right there. My surgeon cares, but he cannot fall apart if something bad happens to me - he's married, he's got a child, there are many more people in his life who need to come first if there is a choice to be made.

I don't know what type of person I would have become without kidney failure, as I never got a chance to know myself that way. MM, I well and truly know that you did not need ESRD to teach you anything. I also know that no one gave it to you, nor wished it upon you. As Anna was saying, these people and these procedures are not the enemy. I hear how angry you are, and if I knew the secret to helping you, I would tell you. We have to let people try, though. If we are going to declare that they are bad at their jobs the moment they make a suggestion that does not work for us, we won't get far. That is not to say that there is never a time to think "Wow, this person really IS bad at their job. I best do a runner." If therapists had to experience everything that we all go through in order to offer help, we would have precious few therapists who can offer us anything. Perhaps, MM, you are just not one for whom therapy is going to be effective. I have to admit I am probably the same way. On the one hand, I see you advocating for realism (a thought process close to my heart) and understanding that there are limits to everyone's compassion, and that it does not matter whether a person understands you, just that they are trying, but on the other, I see a lot of toxic anger at the people who cannot change your situation. You have every right to be angry, but I do know from experience that the anger will poison you in the end. So, while I would never try to argue with your anger, I do hope that it makes you feel better to come on here and release it, perhaps even use IHD to start to let go of it, and that you can find joy in all the little things in life, and the people who are here for you and do care. 

[MooseMom]

To clarify re walking out on the psychiatrist, that was the culmination of almost an hour of really awful "advice" from this woman.  The reason I went to a psychiatrist was because I wanted to see someone who had the authority to prescribe anti-depressant meds if I chose to go that route.  Actually, I had already seen a therapist who suggested this very thing; she was professional enough to be honest with me.  She didn't have prescription powers, and she wanted me to have that option.  This particular psychiatrist was just one who was approved by my HMO, so I knew nothing about her.

When I made the appointment, I had mentioned that I had kidney disease, hoping that this information would be relayed to the psychiatrist.  Of course it wasn't, so there was a lot of disinterested discussion about the various side effects of anti-depressants and how they might interact with the Eiffel Towersized amount of meds I was on already.  She seemed to be really hung up on the fact that a lot of anti-depressants caused weight gain.  I said that I wasn't really happy about that because I didn't want to further compromise my health, so she got frustrated by that.

I made the mistake of having my husband with me; this was all some years ago when I was new to this area, and he offered to take me to the appt; I didn't knew where the hell her office was...some weird part of vast Chicagoland I had never heard of.  I love my husband, but he is very quick to offense, and before I knew it, there was some weird power struggle between him and this psychiatrist.  So, by the time she came out with the "treat it as a job" analogy, I was done.  I'd had enough.  I already knew she could not help me because she seemed annoyed with my state of mind.

But this was, say, five years ago, and I've come a long way since then.  My emotions at that time were fierce but undefined.  The fear and anger clouded everything, but now I can much more clearly explain what I fear, what I resent and why.  My needs now are probably easier to deal with because I understand them more.  I need ways to keep my anger in check, but at least now I recognize that when I didn't five years ago.  I need ways to help me find some pleasure today.  I need ways to help my mind relax.  If I could have explained those things 5 years ago, maybe the psychiatrist would have been of more help (but frankly, she was a grumpy old cow, and I knew immediately she was not the person to help me.)

I saw a counsellor last year that I quite liked, but then my mom got sick, and that was a long, horrible affair.  A lot of unpleasant things have happened since then, and I've just not had the time to go back to see her.  I am in one way hesitant to do so because it means having to talk about my anger and fear, and I don't want to scrape off any scabs right now.

I don't expect a therapist to "understand", but I do think it is important for one to at least give me a few minutes to explain what kidney failure and dialysis means, and I would think that any professional would be grateful for any knowledge that would help them help me.

I can understand finding it bleak if you believed that people don't "care", but I guess it depends upon who you want to care.  I want my husband and my son to care, but I don't need anyone else to care.  I'd like them to be kind to me, but I don't need them to care about me.  I'd like them to care about doing a good job and about not missing that vein, but I don't need them to care about me.

My husband works in a department with six other people.  One has a wife who has MS that is getting worse; she is struggling to stay at work and keeping her illness secret.  I think about her struggles a lot.  Another has a wife whose mother is in advanced Alzheimers and doesn't recognize anyone.  One of the secretaries has just been diagnosed with lupus; her skin is so inflamed that she says it feels like she is on fire.  Her husband is diabetic and has a kidney transplant that has lasted 20 years, so that's been another story.  Another secretary lives in a neighborhood that has, for whatever reason, become overrun with gangs.  The house next door to her houses about 20 nefarious young people who make her life a misery.  The other employees in that office probably have issues that they have not shared.  But yes, I am forever mindful that other people have their challenges, so that is why I am not quick to judge or to take offense.

I have a lot of anger, but I do not take it out on anyone; I wish I could.  My husband could be great target practice, but I'm smart enough to know that no one is to blame.  Sometimes I wish I were selfish enough to take it all out on someone, but that's not fair.  But since it IS untargeted, it is that much harder to deal with.  I don't know what to do with it.  That makes it toxic, and I know it, but I try to keep the poison to myself.  When it gets to be too much, I come onto IHD and vent just like others do.

[Willis]

My point-of-view now at age 58 is that I'm too old to die young. A long-time friend who was the same age just died unexpectedly from a heart attack two weeks ago. We don't know when it's our time. So even though I Hate Dialysis it beats the alternative.

 

[Meinuk]

I keep chastising myself into thinking that this would be SUCH a fun thread if we were simply listing all of the BS that we have heard chairside.  sorry I turned it over by writing a lot about feelings and dealing with others.

Now, RE:  therapy... Through the years, I have been to a few psychiatrists/ologist, all to deal with my feelings of isolation or dealing with my disease.  Now I'll share my adventures in therapy, and why I feel like I learned more from The Essential Writings of Tich Naht Han, than I ever did sitting in a psychiatrists office.  (but I should add a disclaimer:  I live with a Jung scholar)

In highschool, I saw a counselor (I don't remember what her credentials were) to help me deal with grief and my family dynamic.  She was a proponent of writing.  Maybe that is how I got my start.  She had me write letters to my family, and myself.  It helped.  She even counsled my then boyfrined, and I think that having him involved in my sessions as I neared graduation helped us to navigate a relationship that lasted for years.  It could have been explosive, but it made us more sensitive and introspective. Those years gave me a great starting point for communicating with people that I care about.

Psychiatrist # 1.  I was 18.  I sat down, started bawling about all of my issues (and there were many).  He said "You'll probably never come back".  And I didn't.

Psychiatrist #2.  I was 27.  I was having relationship and life issues and I just wanted to run away.  I met with this man once a week for three months. He wrote me a seven page letter to tell me that he had developed feelings for me.  I moved to Europe.

Psychiatrist # 3.  I was 40.  It was mandatory for my transplant work up.  He was in his 50's, still lived with his mother, and he couldn't get her to quit smoking.  He loved to eat home made Jewish food, and he wanted to find a woman who would cook it for him.  After THAT miserable 45 mins, he said that I needed to see him again for him to be able to do a proper evaluation.  I did it, I went back for a second week, and found out that his job was really stressful, and working with some of the bright new surgeons was amazing, but he worried that they were not following their hearts.  He asked me if I would like to go into regular sessions with him.  I said no.  He never filled out my transplant evaluation form. When I spoke with people at the hospital about him, they simply said "yeah, he is a strange one".

Psychologist # 4.  I was 40.  I decided that a man would never be able to deal with me objectively ( I am a flirt by nature, and I just can't turn it off).  This woman, (a PhD. not MD) was referred to me by my Transplant Center.  She was GREAT.  We chatted some about my issues, some about the transplant, she wished me luck, filled out the paperwork and it was done.  She also said, "If you need someone to talk to, I am here, just call."  A few years later, I was in crisis, and I needed someone to talk to.  I called her and left a long message on her office voice mail.  She never returned my calls.

I am lucky.  For years, I worked with a medical team that uses Cognative Behavior Therapy in a wholistic approach to medicine. http://www.bing.com/health/article/mayo-127157/Cognitive-behavioral-therapy?q=cognitive+behavior+therapy Even though my participation was informal, I was given a lot of tools to "Help myself".

Finding a good therapist is like finding a needle in a haystack.  They are people too, and generally, I have found, it takes a certain kind of individual to go into the field.  As I said when I was on the Academic Standards Committee, ferreting out cheaters, "It takes one to know one".

Ok, now I will share a lie that my clinic told me (keep in mind that my clinic was closed by the state department of health for giving nine people Hep C) -  from a staff nephrologist: "I can't fill this release for surgery form out for you, I can't state anything about your health, you'll have to go to a doctor for that."

That doozy came from a board certified medical professional.

[cariad]

I keep chastising myself into thinking that this would be SUCH a fun thread if we were simply listing all of the BS that we have heard chairside.  sorry I turned it over by writing a lot about feelings and dealing with others.

Ha! I was thinking the same thing. I also feel that I have a bad habit of chasing tangents and that I deserve a good dose of the blame for not letting this thread reach its potential.

MM, what you wrote makes your situation so much clearer. Good for you for dropping the psychiatrist and recognising a cow when she is right in front of you mooing on endlessly. You and I are very different about the caring, as opposed to the 'being kind' where I believe we are in full agreement. For me, I need people to care about me and I need to care about them back. I need to know that there are people in this battle with me (the battle being life) and invested in my outcomes. My husband and kids are not enough for me, like one of my favourite Richard II lines, I "need friends". I need to connect with the medical people around me, because if I don't, I won't return. My surgeon seems to want to have a Scribner-esque relationship with his patients, and I just love that about him. He is not going to call me to go out for coffee, but when I am in the area, I think he would like to know that I want to come say hi and catch up. I feel indebted to him, and his compassion is part of what drives me to succeed, to find happiness. It took me a long time to admit to myself that I needed people in my life, and that I could be hurt when people chose to leave me or made it clear that they do not care. It was a powerful defense mechanism for me to convince myself that I did not care. Sometimes I care despite myself, and that is the worst.

OK, I don't have a clinic lie, but I do have a transplant surgeon lie. This gem comes from a surgeon at University of Madison:

cariad: What are the risks to a live donor in donating?
surgeon: (dramatic pause, self-satisfied smile on his face) There are none.

Nothing against that man, I thought he was one of the better offerings at that horrible centre, but I sincerely hope he knew that was a lie, because the alternative is frightening.

[daveosaurus]

I once had a social worker tell me how much I'd enjoy in center dialysis because of all the new friends I would make and that I could relax, watch TV, use my laptop and sleep. She left out the part about feeling weak, drained and sick at the end. Yeah, I really enjoy that

[ESRD Survivor]

I was told I would get used to it....yeah right!

My other favorite thing told, not a lie but was said, pretend you are sitting on an airplane for 3 hours, and I said yeah going nowhere!  These people have not had to sit still with needles in there arm!

[billmoria]

no one lied to me. strangely i do think of it as a part time job and in my mind the payment is another to live and love. i am sorry that i bring so much tension into my partners life.

[MooseMom]

Oh, I so agree that finding a good therapist is like finding a needle in a haystack.  I have two gems to share:

1.  When I still lived in the UK and after I was first diagnosed, I had just had my baby, so I was very anxious about the thought of not surviving long enough to watch my kid grow up.  My GP referred me to a psychiatrist so that I'd have the option of anti-depressants, and the psychiatrist, after hearing my story, told me that I should (are you sitting down for this?) go and have more sex with my husband.  I kid you not.  I went back to him just one more time and snidely remarked that I was now cured, thank you very much for your time.

2.  At around the time I went to the aforementioned psychiatrist, I was desperately trying all kinds of ways to deliver myself from hell.  I saw all manner of professionals, trying to find one who fit me well.  One old duffer I saw ended our first session by telling me that I should join his church.

This is quickly becoming the "outrageous things therapists/psychiatrists have told me" thread!  See?  It can still be funny!

Cariad, I understand the "I need friends" mindset.  I think I used to be more that way some years ago, but certain situations and certain people have sort of beaten that need out of me.  I wish I could be more like that, could feel that need more acutely; it might restore some humanity to my life.  I have not been around as many medical people as you have been in your life, but once I start dialysis, that will change, and I might find that my needs change, too.  I have not closed myself off from wanting people to care about me.  It's just that when I have discovered that people who I thought cared actually did not, it didn't hurt me as much as I thought it would.  I'm not really sure what that says about me...probably nothing very good!

[cariad]

I have not closed myself off from wanting people to care about me.  It's just that when I have discovered that people who I thought cared actually did not, it didn't hurt me as much as I thought it would.  I'm not really sure what that says about me...probably nothing very good!

I think it could be part defense mechanism, part just wising up, I suppose. I detach pretty quickly. I had a friend ignore me many years ago, right when the kidney issue was really starting to come to the fore. She then contacted me out of the blue almost two years later with a "are you still at this email?" message. No, 'hi, I know it's been a while', no hint that she even noticed. I ignored the message. Then she wrote me a month later saying that I don't seem to want to chat  ( I would have to be pretty desperate to have called checking on my email address the start of a chat) and that she had a few gifts that she had forgot about for my child. (She did not even know I had the littler one.) She is someone who is always telling everyone how busy she is, and it was no lie, she certainly was extremely busy, but I find that busy is 99 out of 100 times a choice, and I told her so. We reconnected for about a year, but I just could not really get back into the friendship, and she has not exactly tried to hunt me down since, so I can only think it was mutual. Sometimes there is a cooling, and no one can exactly explain it, and it's best if everyone can just accept it and move on. Not to say that if we were living in the same town I would not want to see her, but to feel like I am burdening someone with my friendship because this other person just claims to be too busy to deal with me was more than I was willing to go along with.

I had a friend once who used to say "If all of my friends disappeared tomorrow, I would not care. You are the only one I would miss." She was depressed. I've had that lack of emotion toward people, and I personally hate the feeling in most circumstances. I also truly believe that this is all the life anyone gets, and so all that matters in the end is the time you share with other people and the ways in which you try to improve upon the world that we all live in.

Oh, hell, I've done it again with the tangent. Time to think of another lie: I told a nephrologist here in Milwaukee that I was on 25 mg of OTC iron, and the crazy lady told me that was impossible because it only comes in 60mg and 300mg, or something. She would hear none of this "but I see that bottle every day" talk from me. She wrote the 60mg on my chart. I fired her, but showed her nurse the bottle at the next appointment and the woman just sat there staring at it, utterly stunned, as if I were showing her some magical substance. You think maybe a certain neprhologist has everyone convinced that she is never wrong, and that patients cannot possibly know more about their own lives than she does?

[jbeany]

I was told I would get used to it....yeah right!

My other favorite thing told, not a lie but was said, pretend you are sitting on an airplane for 3 hours, and I said yeah going nowhere! 

Airplanes don't crash as often as D patients!

[RightSide]

That reminds me of a news story I read years ago:
Patient’s Dialysis Is Like a Job, but Doesn’t Pay the Bills
http://www.nytimes.com/2006/11/18/nyregion/18neediest.html?oref=slogin

So it's more like volunteer work. You're working at a volunteer job called Help Yourself.

[Lillupie]

Yeah,
 I got lied to too on that....After 4 years I still have peroid.  grr

Lisa

Well, I bet that line works on a few patients...

I loved it when the nurse told me my periods would just stop and I wouldn't have to mess with them anymore.  NOT!  Heparin just makes them worse and worse.

[gothiclovemonkey]

as a mother, i feel that is my first job, and that dialysis is a requirement to fufill my job.