Question about communication emotional side effects of dialysis to docs, etc.

[rfranzi]

I have a general question, that might answer some suspiscions I have. A little background - relatively new to dialysis. But I also have claustrophobia, anxiety disorders, and some depression. Actually, for someone who had these things before the kidney disease was diagnosed, dialysis is about the worst thing I can imagine would happen to me. I talk to my docs, nurses, etc. about this because I don't think it is all mutually exclusive (kidneys and mindset) or unusual. The way they talk back to me (mostly doctors and techs, I do have one kind nurse).....is they act like I am the only patient who has these issues or that I am rare. Like no one who is on dialysis ever gets upset or depressed or anxious. I would imagine most people feel some of these at some time, even if it is not as much as me. It has become clear, and we have had conversations about this, that the medical profession is not trained to deal with any mental health illness issues whatsoever. I had a panic attack in the chair the other day, for instance, when a tech had the heat on and never told me, and after a couple of hours I was burning up and felt very uncomfortable like my skin was crawling. When I found out the heat was on, I was very upset. To me, that's like negligence and mild torture and I wanted to complain because I didn't want it to happen to someone else, but I haven't quite yet, although I did let them know how I felt about it. Anyways, do you keep your depression/anxieties to yourself if you have them? Are you worried about repurcussions if you complain, or are you worried about being typecast or discriminated against because of how you are feeling emotionally? Just wondered......I am so sick of hearing...(other patients don't seem to have that issue...)

Thanks!

[shutterbug05]

I am not sure why your medical team would respond to your concerns like this as depression is quite common with any chronic illness, and CKD/Dialysis qualifies.  As for anxiety and other mental issues, it would also be expected as your body goes through plenty of chemical imbalances with dialysis and your response to these changes could easily affect your mental status.  This is one of the reasons that a social worker is available on your medical team at your clinic. You may want to speak with the social worker at your clinic as well.  As usual you can always post your concerns here and there is a good chance that someone here has had a similar experience and would be able to advise you from their experiences.

[jbeany]

The depression and anxiety are caused by the toxin levels that come with kidney failure.  Of course, they are also caused by the changes in your life that come with chronic health problems, like constant fatigue, stress over money, being worried about your family and how they are coping, being worried about....well, just fill in the blank here, and you get the idea.  Just for fun, toss in the worry that mental illness might cause difficulties with getting on the transplant list.  If you have a history of anxiety, depression or whatever else - ESRD just makes everything more intense.

Peachy.   

Okay, so it's pretty much expected, but that doesn't mean you shouldn't work on getting help.  I can't make a blanket statement about doctors not dealing with the mental issues.  Some do, some don't.  Personally, my neph never even asked how I was coping.  My social worker was a doll, however, and did everything she could.  My GP asked, too, and would have happily written a scrip if I'd wanted one.  (I did for a while when my mother was dying, actually - that on top of everything else was too much for my body to handle.   I went back off of it about 6 months after she passed away.)  If you can't get any real help from your D team, consider getting outside help from a counselor or another doctor.  Dialysis is hard enough physically without fighting unnecessary emotional battles on your own.

As for someone saying, "Other patients don't have that issue."   

We are NOT cut out with cookie cutters or pressed out of molds.  We are individuals and all of us have different coping skills, different support systems, and different issues that were present long before we started on dialysis.  The next person who points out that particularly unhelpful bit of information needs to be reminded of that.  I'll leave how nicely you remind them up to you.  Smile it or snarl it - your choice.  If it was me, I would be nice to start, and remind them that you had anxiety problems before that are being exacerbated by ESRD.  Hopefully that works, but you can always kick up the volume if you have to.

Good luck!   

[ChrisEtc]

I have a general question, that might answer some suspiscions I have. A little background - relatively new to dialysis. But I also have claustrophobia, anxiety disorders, and some depression. Actually, for someone who had these things before the kidney disease was diagnosed, dialysis is about the worst thing I can imagine would happen to me. I talk to my docs, nurses, etc. about this because I don't think it is all mutually exclusive (kidneys and mindset) or unusual. The way they talk back to me (mostly doctors and techs, I do have one kind nurse).....is they act like I am the only patient who has these issues or that I am rare. Like no one who is on dialysis ever gets upset or depressed or anxious. I would imagine most people feel some of these at some time, even if it is not as much as me. It has become clear, and we have had conversations about this, that the medical profession is not trained to deal with any mental health illness issues whatsoever. I had a panic attack in the chair the other day, for instance, when a tech had the heat on and never told me, and after a couple of hours I was burning up and felt very uncomfortable like my skin was crawling. When I found out the heat was on, I was very upset. To me, that's like negligence and mild torture and I wanted to complain because I didn't want it to happen to someone else, but I haven't quite yet, although I did let them know how I felt about it. Anyways, do you keep your depression/anxieties to yourself if you have them? Are you worried about repurcussions if you complain, or are you worried about being typecast or discriminated against because of how you are feeling emotionally? Just wondered......I am so sick of hearing...(other patients don't seem to have that issue...)

Thanks!

As jbeany said, there's a tendency by staff to try to treat all patients accirding to a cookie cutter treatment regimen.  The problem of course is we're all different and I'm sure most of us have a desire to be treated as individuals rather than being given stock answers to questions because the staff doesn't want to listen to you.  You should explain that you don have a lot of interest in other people's care, your concern is for your own care.  Always demand the treatment or care you expect otherwise you won't get it.  Sad but true.  Good luck