One-on-one support for CF

[cffriend75]

I found this site by trying to find counselors/psychiatrists/psychotherapists that might specialize in working with those with CF.

I am very close to someone with CF, and they have expressed their frustration with the lack of outlets for more "emotional" therapy for adults who have grown up with CF (he has commented on the knowledge of always being "sick" and the clearance processes endured when he was very young). He is very successful and together, but he knows that there are lingering metal issues from always "feeling like an outsider" with this disease.

I know he wants to be able to talk with someone who understands CF. He has found that many doctors he has gone to do not understand CF beyond the text book definition, and most of the specailists are pediatricians. I am not sure if he uses sites like this for support from other CFers, but I think he is really looking for one-on-one therapy. He is afraid that going to just any therapist will result in them not understanding and not being helpful. And I do not think he is ready to take the time to seek out a therapist that he feels comfortable with regardless of their expereince with CF.

I'm not sure if this makes sense -- but I am hoping that some of you understand the feelings that he experiencing. I do not have CF, so I can only offer so much support before it gets to the "I can only imagine" stage.

He's 28 and in great physical health (very dedicated to his daily health obligations), and I so want to see him find a way to balance these emotional feelings as he reaches milestones he may not have thought would arrive. I feel like maybe he never expected to actually reach 30, but now it is right around the corner and he's having hard time shifting into a new stage of life.

Any advice on finding a good counselor, or success stories with therapists who do not necessarily specialize in CF patients would be greatly appreciated. Or if you are a therapist with CF... We are in the Chicago area if you have any specific resources. Thank you so much!

 

[thelizardqueen]

I speak with a CF counselor once a week. She's a trained CF nurse, who specializes in counseling. She's there for when I want to talk, to rant, to cry, or basically anything. She doesn't judge me, she doesn't make me feel little or unknowledgable. You should get your friend to talk to his CF doc about getting referred to the CF counselor. All CF teams have one.

 

[cffriend75]

Thanks for the quick reply. He said he asked, and the doc said that he didn't know of any. Maybe he is not going to the best doctor... But that is great info to know -- I am new to all of this (only known him for 6 months).

 

[Mockingbird]

<a target=_blank class=ftalternatingbarlinklarge href="http://www.rush.edu/rumc/page-1099918801150.html">http://www.rush.edu/rumc/page-1099918801150.html</a>

The Chicago team seems to have a social worker... I find it weird they wouldn't know of a therapist in the Chicago area; does he actually go to a clinic, or does he just see a regular doctor? It really is best to see a whole team...

 

[anonymous]

Why does it HAVE to be one that specializes in CF? I see a therapist....have seen for 3 years. He's awesome though he is not experienced with CF. He has worked with chronically ill patients though.

I had to find a norma therapist because I had other issues(many) that one that worked with CF patients probably wouldn't be able to help with.

 

[BaylorCrew07]

I could see the benefits of seeing a counselor specializing in CF... when my fiance and I went to couples counseling the lady just never really understood what CF was despite my many attempts at explaining it, which was fine I guess, but if the person knows/understands the intensive treatments, physical manifestations, etc. it would make sense that they could better relate to the psychological and emotional issues as well.

Anyway, there's a social worker or someone who came into my clinic room to talk to me about the 'emotional aspects' of CF and she was a complete moron. She had no idea how to ask questions and I did NOT want to open up to her. Wish she was a good as the lady you have Liz; that'd be great!

 

[thelizardqueen]

You need a therapist or counselor that understands the depression and problems that people with CF go through. A lot of us suffer anxiety or depression due to our CF, not outside problems. I would rather go to someone who understands why CF affects my mood, etc, then an outsider who has no clue.

My counselor is great. She always has time for me, she understands the problems I face with CF, and can offer me advice. She even calls me at home to make sure everything is ok. A little while ago Cory and I were going through some stuff due to me being admitted, and when I called her to talk about it, she booked me asap, and follwed up after I was discharged to make sure things were going well between us.

Plus I would imagine that because your CF doc referes you to one who knows CF, or is a CF counselor with the team - it would be covered by basic insurance because they are part of the CF team.

Edited to add: the counselor I see allows me to talk about everything under the sun. It doesn't always have to be about CF.

 

[LisaV]

In Chicago there is a really good proram called the Families, Illness and Collaborative Healthcare Program.
Dr. John Rolland ( <a target=_blank class=ftalternatingbarlinklarge href="http://www.ccfhchicago.org/facsearch.asp?core=John+Rolland">http://www.ccfhchicago.org/fac....asp?core=John+Rolland</a> ) is the co-director. He wrote and excelleent book called "Families, Illness, and Disability: An Integrative Treatment Model" and is well known for his clinical work with families and individuals living with serious chronic progressive illness. I think if you contact the Chicago Center for Family Health ( <a target=_blank class=ftalternatingbarlinklarge href="http://www.ccfhchicago.org/about.html">http://www.ccfhchicago.org/about.html</a> ) they could recommend individual therapists who would be very good.

 

[cffriend75]

This has all been so helpful! I found 3 CF programs in Chicago that have social workers on staff -- I just didn't know where to start looking before. I am guessing that he goes to an individual doctor (he's never mentioned more than one). He has lived in different parts of the country over the past 10 years -- but I imagine he saw a team when he was younger. He has not been admitted in the 6 years he's lived here, which could explain why he has not reached out beyond his individual doctor. From what I can tell, he has run into too many people who don't understand CF. He gets frustrated with their lack of knowledge -- which is why he wants to see someone who is familiar with it. One time we were talking about how the things in your childhood affect you as an adulit (i.e. parents getting divorced, etc.) and he brought up the fact that as a child with CF your parents were always pounding your back for clearance -- and there was no way you could understand why they were doing something "violent" to you, until you were older. He made the comment that there's no way that the things surrounding CF from his childhood don't have some sort of psychological effect. I know he is ready to start talking to someone (you how stubbon guys can be!). So hopefully he will respond well, when I pass this info onto him.

 

[JennifersHope]

My CF social worker is there for me anytime I need her. In fact she is the one who reaches out to me most of the time. I have her email, cell phone and pager number.... and she is available to me 24/7 which is so amazing.

SHe is always updated with what is going on with my health, school or work through my CF nurse and she always emails me to let me know that she is there if I want to cry, scream, yell, vent or laugh.

Maybe he can try that avenue... I personally find this CF forum to be one of my greatest sources of therapy besides for my friend John yet

Jennifer

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JennifersHope</b></i>


I personally find this CF forum to be one of my greatest sources of therapy besides for my friend John yet



Jennifer</end quote></div>


Me too!

 

[Jane]

We are having a very difficult time find counselors for my boys. Most people have no idea how to counsel someone with a chronic illness. We have a wondeful psychiatrist in our clinic, but she doesn't do outpatient.

I agree with Liz- it HAS TO be someone who understands the disease!

 

[Mockingbird]

<div class="FTQUOTE"><begin quote>he brought up the fact that as a child with CF your parents were always pounding your back for clearance -- and there was no way you could understand why they were doing something "violent" to you, until you were older.</end quote></div>

Um... wow, I've never heard of that problem. I mean, CPT really isn't supposed to be violent, nor has it ever felt violent for me... Maybe it was being done wrong?

 

[thelizardqueen]

CPT is relaxing for me. I never found it violent. If anything I used to fall asleep getting it done, I still do on the occasion.

 

[cffriend75]

I am just repeating a comment he made once... Perhaps he was a dramatic child. I don't by any means think it was actually violent -- more that he is trying to picture how confusing it must have been when he was too little to understand or even remember, and what kind of affect that could have had on him. He was diagnosed shortly after he was born. In the same conversation we talked about how surely my parents' divorce when I was 2 must have had some sort of lasting affect on me -- even though I can't remember! Think deep and introspective vs. tear-jerker moments from childhood. <img src="i/expressions/face-icon-small-smile.gif" border="0">

But I don't really want to get into a discussion about whether or not his clearance was being done properly, since I can't read his mind and I wasn't there. <img src="i/expressions/face-icon-small-smile.gif" border="0"> All I know is that he has expressed interest in finding a therapist to talk with.