Looking for a therapist

[MooseMom]

I have struggled with CKD for a long time now, and much to my chagrin, I am not finding it easier as time goes by.  As I get closer to dialysis, it is getting harder.  I've tried many things in the past, including therapy, but I have not been able to find a therapist who neither wants me to join his church nor gets into a fight with my husband about what is best for me.  I know that my lifespan is going to be shortened, and I do not want to spend the rest of it in such an emotional funk, but I now believe that I can't do this by myself.  So, my question is how do I go about finding a therapist who will work well with me?  I am on an HMO, so my choices will be limited, but surely there is someone on the list that can help me.  Do I ask specifically for a therapist who works with people with incurable diseases?  What sort of questions should I ask when choosing someone?  Anyone have any suggestions?

Thank you!

[monrein]

I'd ask for a list of people from the HMO and call and have a brief telephone interview with several before choosing a couple to meet in person before deciding.  I'd be upfront about this and directly raise the issue of their personal experience in working with the psychological components of chronic illness.  Sometimes, a therapist can be the best fit even though they may not have the formal training in a specific area.  At my former agency which was quite small at the time, our intake department had a very good idea of who worked best with particular types of clients and they often did a good job of matching and predicting fit.  Didn't always come out right of course but then we also worked as a team and could even suggest a switch or a consultation.   I had no specific expertise in chronic illness but because of my personal situation which was common knowledge I sometimes got those clients or consulted to other therapists on their cases.

Best of luck with the search and don't give up based on who you get hold of on the first or second try.  You also want a therapist who isn't afraid of listening to the rawest of emotions and isn't afraid of challenging you when you find yourself swirling around the same whirlpools of self-pity or whatever else might come up.  Always a fine balance...support and challenge.   

[lunadatura]

As a dialysis patient and professional therapist I would concur with Monrien about her advice for choosing a therapist. Get the list from your HMO. Pick 5-6 near you and call them on the phone and talk with them about your concerns. Then make an initial appt with 2-3. What makes a therapist client fit often is at least in part about personality and the therapists ability to listen and align wiht the client's concerns. A therapist may not have a ton of professional experience dealing with chronic illness and depression but sometimes they have the empathy and compassion to be helpful nonetheless.

[Sunny]

I agree it seems like a good idea to get a few names that are accepted by your medical plan and then decide from there.
I know that I asked my General Practitioner for referrals and personal thoughts on which therapist would be a good fit for me (when I went).
Seems like a good step in the right direction. Good luck.

[RightSide]

First of all, you need to distinguish between therapy and advice.

If you're looking for advice on how best to manage your life, that's more the job of a social worker than a therapist.  A therapist can help you manage the emotional component of your illness, but I believe it's going to be most effective only after you've gotten the rest of your life--marriage, finances, lifestyle--in some kind of order.  And social workers can help with that.

As for therapy, there are several schools of thought.  I believe that your fastest route to success would come with Cognitive Behavioral Therapy (CBT).  Unlike traditional psychotherapy, CBT doesn't care about the causes of your heartache.  Instead, with CBT, you learn a series of "Jedi Mind Tricks" that enable you to head off negative thoughts like fear, anger, and depression, before they get out of control.

So I would look for a psychologist who does CBT.  He will also be able to decide if you're unlikely to be responsive to therapy without medication; and if necessary, will refer you to a psychopharmacologist. From then on, they work together on your case.

[MooseMom]

As for therapy, there are several schools of thought.  I believe that your fastest route to success would come with Cognitive Behavioral Therapy (CBT).  Unlike traditional psychotherapy, CBT doesn't care about the causes of your heartache.  Instead, with CBT, you learn a series of "Jedi Mind Tricks" that enable you to head off negative thoughts like fear, anger, and depression, before they get out of control.

So I would look for a psychologist who does CBT.  He will also be able to decide if you're unlikely to be responsive to therapy without medication; and if necessary, will refer you to a psychopharmacologist. From then on, they work together on your case.

Yes, exactly.  I am faced with a situation that is not going to change, and I need to change the way I think about it.  The source of my anxieties and fears is no great mystery requiring hours of analysis.  What I am feeling is not abnormal or unique, but the degree to which I am feeling these things is heightened to the point where I feel it physically, and that is not good.  I am afraid of it getting out of control just like you mentioned, and I don't want that..

[RightSide]

The source of my anxieties and fears is no great mystery requiring hours of analysis.  What I am feeling is not abnormal or unique, but the degree to which I am feeling these things is heightened to the point where I feel it physically, and that is not good.  I am afraid of it getting out of control just like you mentioned, and I don't want that..

OK!

In that case, the National Association of Cognitive-Behavioral Therapists has a website where you can search for one of their members in your area:

http://nacbt.org/searchfortherapists.asp

Their website also has more info on CBT and how it works.

[Rerun]

I'm FREE so call me anytime!

                                                       
No one normal can relate to what you are going through.  There are no self-help books on knowing you can die from this at any time, yet being kept alive from week to week on a machine.  Who writes about that?  This is not paranoia that you are going to die; it is a reality at which point we don't know.  And it is not a normal healthy person being afraid of a car crash or drowning.  It is just a different frame of mind.

[MooseMom]

Oh jeez, Rerun, I whine enough in cyberspace without having to subject you to more on the phone!

A question.  As I was taking a shower, I was sort of imagining a conversation with a therapist, and I quickly realized that no one is going to be able to get through to me unless and until she/he has a basic understanding of my concerns.  Would it be way out of line to ask a therapist/CBT to educate himself on everything the kidneys do and what their failure actually means?  Do most therapists know about the heightened risks for cardiovascular problems in CKD patients?  Bone problems?  All of the scary things that happen to us on a daily basis?    Can they evey spell "phosphorus"?  I don't need my therapist to understand how I feel, but I'd like him to know WHY I feel the way I do.  I just remember seeing a therapist once who suggested that I treat CKD like a 9 to 5 job, ie, stop thinking about it after 5PM.  Have you ever heard anything so ludicrous?  Does she think that kidneys function only from 9 to 5?  I just tuned her out and never went back.

Any opinions?

[Rerun]

Have you picked a dialysis center yet?  If you have, go there and make an appointment with the Social Worker.  If you don't like him/her then go to another center and make an appointment with the Social Worker.  Find one you like and who is knowledgable.  Most of the ones I have met are idiots, but I have found 1 or 2 that had some useful information.

Otherwise you will be educating the therapist. 

[Quickfeet]

If you discover the secret please let us know. I want to get out of this funk and stay out of it. I have lots of great reasons for feeling crappy but that doesn't make my life better. I need a way to enjoy my life despite all the pain and crap.

[monrein]

Oh jeez, Rerun, I whine enough in cyberspace without having to subject you to more on the phone!

A question.  As I was taking a shower, I was sort of imagining a conversation with a therapist, and I quickly realized that no one is going to be able to get through to me unless and until she/he has a basic understanding of my concerns.  Would it be way out of line to ask a therapist/CBT to educate himself on everything the kidneys do and what their failure actually means?  Do most therapists know about the heightened risks for cardiovascular problems in CKD patients?  Bone problems?  All of the scary things that happen to us on a daily basis?    Can they evey spell "phosphorus"?  I don't need my therapist to understand how I feel, but I'd like him to know WHY I feel the way I do.  I just remember seeing a therapist once who suggested that I treat CKD like a 9 to 5 job, ie, stop thinking about it after 5PM.  Have you ever heard anything so ludicrous?  Does she think that kidneys function only from 9 to 5?  I just tuned her out and never went back.

Any opinions?

Rightside is quite right about CBT being an effective tool to help with anxiety.  It is one of the most effective therapies for Obsessive Compulsive Disorder for  example and can be effective in coping.  Many therapists and that term can most certainly include social workers, psychologists and psychiatrists are able to help with this.  There are good professionals in all fields and there are also useless ones in all of them too.  Medical doctors are but one example.  Nephrologists who have a very thorough understanding of all the issues involved in CKD usually do not help much with the psycho-social issues despite knowing how to spell phosphorus and being aware of LVH or whatever else there is to know as fact.
You say that "no one is going to get through to me unless and until he/she has a basic understanding of my concerns".  It is of course important for a "helper" to understand your concerns but the nature and impact of these concerns vary from patient to patient or in more human terms, from person to person.  BUT you must be prepared to educate whomever you choose on how these facts and issues are affecting YOU and only you, if you can ever expect anyone to help you find functional ways of coping with these facts.  No one can change the facts of our disease.  They are what they are, they suck and they don't disappear.  Like many things in life however, they can be managed.  We know that diet and exercise are important and yet many patients do a bad job of taking charge in these areas.  They don't need someone with knowledge of these facts to lecture and harangue them or tell them again what they already know.  Far more helpful is to find someone with the ability to connect, human to human, and work together towards a frame of mind which will allow the person to take back whatever control is available to them in order to minimize the effects of our illness and to lead as full a life as possible.   A very important part of therapy is  the exchange of information (so what if you have to give your therapist some concrete info about something specific) and the issue for you MM appears to be that the facts are overwhelming you and crippling your ability to enjoy what you can and to sort things out step by step...something that you seem very capable of doing until the WHOLE SITUATION slaps itself once again on your head and you become submerged.   
You mention the therapist who annoyed you, to the point of leaving,  by suggesting that you limit the time you spend thinking about ESRD as if it were a job.  And you  found that ludicrous and you tuned her out...OK, perhaps she was an idiot, I don't know her, BUT in fact I myself used to use a very similar technique by allowing myself only the time I was actually hooked up on D to worry and think about and cry and moan etc etc about my situation.  I determined that D already stole too much time from me and when I wasn't actually attached to the machine I needed to get on with doing what I could to not make the situation worse when I was "free".  Many times my thoughts would intrude, at a dinner party for example when I couldn't eat what everyone else was (damned phosphorus), but I would gently remind my mind that tomorrow at 3:00pm we'd have time to think about that and then I'd get back to the business of trying to enjoy the company I was in.  Very difficult at first but like many things it got easier with practice.
From my perspective, the problem with the suggestion to you lies not so much in the idea itself (the issue in the therapy room could be cancer, or the heroin addiction of a child or ANYTHING) but in your inability to turn off your worry which itself could become more crippling for you than any disease of fact associated with it.   You could perhaps instead of leaving have indicated that this in fact is the crux of the matter...your brain keeps on cramming the facts down your throat to the point of making you sicker.  You can be real in therapy.  You can say that you think the therapist doesn't understand and you can get mad at him/her but like any relationship you must be prepared to listen as well and to try on new ways of thinking about things (some may work, some may not, some may be wise others may be foolish) if you want a different outcome.  Unfortunately there really is no magic.   Therapists can appear insensitive even if they're not and clients can frustrate the hell out of a therapist...that's  the work of therapy.
I've rambled on here and hope that I haven't been offensive in any way...talking in real time is so different and yet still we keep on trying to communicate.   

[hotnspicyazgirl]

Maybe you can call the transplant center...they usually have one who works with transplant/dialysis patients...call the social worker, he/she should know of someone.

[jbeany]

Would it be way out of line to ask a therapist/CBT to educate himself on everything the kidneys do and what their failure actually means?  Do most therapists know about the heightened risks for cardiovascular problems in CKD patients?  Bone problems?  All of the scary things that happen to us on a daily basis?    Can they evey spell "phosphorus"?

Unless you can find a therapist with CKD, or one who has a close family member with it, this is pretty unlikely.  Even most dialysis techs don't know a lot of this, and many of the RN's who work in the centers don't have it all down, either.  My experience is that even the nurses who dealt with my care on the transplant ward didn't know much about D, and the nurses who treated me in a regular hospital setting after minor surgical procedures were lucky if they knew anything about it at all.  Basic things like not giving me too much fluid thru an IV push had to be explained over and over.  You will likely have to teach a therapist a great deal about the medical issues - which is why getting a good fit with the personality is so very important.

[lunadatura]

One very important thing that a CBT therapist who is not educated in CKD would need to know is the very low energy, fatigue and mental fog/poor focus that can happen with CKD. An uneducated therapist might attribute these physical symptoms with depression. That would be a huge mistake. A good CBT therapist with a little understanding of the impact of CKD on one's psyche could help out alot !!

[Sunny]

Exactly.
One must learn to tell the difference between exhaustion and low energy caused by ESRD and depression. Many therapist, and people in general, might mistake these issues.
When I am feeling very tired and not wanting to do much my husband used to worry I was depressed. I had to remind him I was not depressed just tired. On the other hand, sometimes I am just depressed.

[RightSide]

I quickly realized that no one is going to be able to get through to me unless and until she/he has a basic understanding of my concerns.  Would it be way out of line to ask a therapist/CBT to educate himself on everything the kidneys do and what their failure actually means? 

Well, now, that's a different story.

CBT doesn't really care how you got your heartache, any more than a doctor you visit for a bad cold tries to pin down whom you caught the cold from. 

As I said, the CBT therapist's job is to teach you how to head off negative thoughts and negative emotions, whatever their triggers may be.  And you get to practice these techniques at home by yourself as "homework."  CBT works fast; you may get some two dozen sessions with the therapist and then you're ready to "solo."  The therapist won't need to educate himself on kidney failure for this to work.

Please put aside the image of you lying on a couch talking to a psychotherapist about all the problems you're having in your life, as in traditional psychoanalysis.  Your conversation with a CBT therapist won't go that way.  Instead, you'll mention some of the negative feelings you're having--fear, worry, sadness, etc.--and what things tend to trigger them.  The therapist will show you what to do and how to think, the next time those triggers occur or the next time those negative feelings strike.  And he'll ask you to practice those techniques on your own at home.

If you're looking for advice on how to cope with kidney failure specifically or how to cope with your life specifically, then you may need some other type of help, such as a Clinical Social Worker (LICSW).

[paris]

Half the time our nephrologists think we are depressed when we say we are fatigued and have no energy!  A therapist would have no clue.

I do like the idea of a therapist helping to learn coping techniques. Not trying to resolve everything, just help me learn what the triggers are that set things off and how to cope or avoid them.   Thanks Rightside, for explaining this.  It makes sense. 

Your thread is helping all of us, MooseMom!

[cariad]

I definitely agree with Monrein and RightSide - it really doesn't matter what causes intrusive, all-consuming thoughts, it just matters that you are able to learn coping skills and put them into practice. I agree with Monrein's interpretation of your former therapist's 9to5 comment. This is one of those "jedi mind tricks" that RightSide spoke of. You pick a specific time period and only let yourself worry during that time. Nine to five sounds a bit much, but really it's what works for you. Perhaps she could have explained it better (before you tuned her out, that is!  ) If it is really that important to you, it doesn't take that long to say "renal failure can cause cardiac problems and bone problems". I think going into more detail would be a waste of time, (and I can't really envision phosphorous being at all relevant to psychotherapy).

Since challenging negative thoughts was mentioned, I want to respectfully challenge this one:

I know that my lifespan is going to be shortened,

MooseMom, to be blunt, you know no such thing. Telling yourself that this is a certainty is doing your mental health no favors.

I think if you are comfortable discussing this with friends, ask around. I am always surprised at how many people in my life see therapists, and are quite open about the experience. Almost all of them have had to suffer through the hopeless morons to find a good one (assuming they were that lucky).

Good luck in finding a therapist. Thinking of you....

[MooseMom]

For anyone who is interested or who is thinking about therapy/counselling, I think I may have an answer to one question.  I asked if it mattered if the therapist knew anything about CKD/dialysis.  Yes, it does, and here's why...  I had my first appt with a therapist last week.  I started out by telling her that simply put, I have an incurable disease and that I am having a hard time dealing with the psychological and physical ramifications.  I told her about the rigors of getting on the transplant list.  The first thing she discussed with me was the possibility of using anti-anxiety/anti-depressant meds.  That told me a lot.  Toward the end of the session, she explained that she mostly deals with patients who have anxiety about their present lives or about their future that has its foundation in "distortion", ie, their anxieties are often based on unrealistic beliefs.  She then works with them to try to change their beliefs into those that more accurately mirror reality.  Mine is an "unusual case" (no, there's nothing unusual about incurable diseases), she said, because my anxieties are very much based in reality.  That was an important realization for her to come to.  Now that she understands I'm not just making this crap up, I think we can work together. 

I hope this helps someone out there.

[RightSide]

I would suggest looking for another therapist who doesn't consider having an incurable illness to be an "unusual case."  Because you want an experienced therapist who has experience with the reactions and anxieties of patients with incurable illnesses.  You don't want to be her first guinea pig.

There are plenty of therapists who work with patients who have suffered a serious illness.  You just happened to pick one who doesn't.

[MooseMom]

I would suggest looking for another therapist who doesn't consider having an incurable illness to be an "unusual case."  Because you want an experienced therapist who has experience with the reactions and anxieties of patients with incurable illnesses.  You don't want to be her first guinea pig.

There are plenty of therapists who work with patients who have suffered a serious illness.  You just happened to pick one who doesn't.

My choices of therapists is somewhat limited due to insurance constraints.  When I contacted this practice, I explained my situation and was assigned to this particular therapist.  I may end up changing therapists, but for now, I think I have actually made a bit of headway.  I purposely scheduled my next session the day before I have my first consult with the cardiologist who will be looking at my test results re: pre transplant cardiac testing.  This appt will be a "trigger" for anxiety, and I thought it would be useful for the therapist to see me in full angst mode as I will be very nervous re the test results and whether or not it means I can be listed or not.

[Wat76]

MooseMom,

I am having a hard time dealing with my situation as well and I am very angry, but my family and friends will not let me sulk.  It is so hard convincing yourself that you will be alright.  I have my ups and downs and some days I want to give up.  I just had surgery for  my fistula and was such a nervous wreck, the doctors knocked me out cold.  It is okay to feel overwhelmed and scared and just not want to deal with the fact that we have a  problem that is changing our lives forever.  Me personally, I am going to try and beat these crazy feelings that I have and everytime i start to feel afraid or frightened I think of my grand children.  I know I will not see all of the finish school or college, but is going to fight to at least see the two oldest.  They are my strength.  I wish you the best and I do believe we all know how you feel because we are all in the same boat.  This website has been a lot of help for me, I have went back and read posts from 2005 on up to get answers to the questions I have and by reading through all the post, I have to be honest and tell you that, this site has helped me a lot.  So many positives along with the negatives and as the old saying goes, This too shall pass.  Not wishing anything bad on anyone else, but there are some who dont have a choice in their care.  The bright side, we have a choice to fight or flight.

[MooseMom]

Wat, do you have "triggers"?  What sort of things send you on a downward spiral?  Does thinking of your grandchildren always provide you comfort?  If so, that's a great coping mechanism you've got there!

[Sunny]

It's very smart to identify triggers that set off your anxiety.
This comment got me self-reflecting. Thanks again for providing insight into my own issues just by reading what others go through.
One of my triggers is my "would -be-donor" sister. Just talking to her sets me off into a realm of unending anxiety for which only Xanax can help.
Knowing this, I am just going to avoid talking with her. However, in your case, a cardiology test is something you can't avoid so getting yourself prepared by seeing your therapist when you have that cardiology appointment is a good way of taking care of yourself.Kudos.