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Author Topic: What ever happened to councelling after diagnosis?  (Read 17651 times)

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Offline ga1964

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What ever happened to councelling after diagnosis?
« on: December 01, 2007, 02:29:11 PM »
Today marks 1 year since I was told I was HIV+ and had AIDS.  My doctor came into my hospital room, gave me the news and wished me well on the surgery that I was to have the next day.  My Mom, who was staying with me in the hospital, was outraged that he would come in the day before I was having major surgery and drop this bomb on me and casually say "Good luck with your surgery tomorrow."  That whole night I was up worrying about the surgery and now I also had to deal with this new news and how I was going to tell my Father and my partner.  Needless to say, I got no sleep that night. 

I remember back in the 80's when HIV was starting to really affect the world, a counsellor would come to talk to those who were just being diagnosed to help them cope with knowing that they were HIV+.  What ever happend to that part of a patients care?  Even Rose on the Golden Girls was offered counselling when she had to take a HIV test and hers came back Neg.  I know that was television, but it also happened in real life.  When a friend of mine (who is no longer with us) was diagnosed, he was offered counselling.  Why now, 20 years later, they just tell you that your positive and walk away like they told you you just had a cold?  I live in a small South Georgia town.  Maybe its different if you live in a big city, I don't know, but I don't think any doctor should drop a bomb like that on anyone without offering information to get proper counselling.  I have had to live the last year trying to keep it together on my own.  The people here have been great at offering positive support and advice and I don't know if I would have made it this long without it, but it would be nice to be able to talk to someone face to face that is going thru the same situation from time to time.  Maybe then I would not feel so alone at times.  Has the medical community forgot that this disease also affects a person mentally, not just physically? 

Offline allopathicholistic

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Re: What ever happened to councelling after diagnosis?
« Reply #1 on: December 05, 2007, 11:16:33 AM »
Hi ga: Before I tested poz in the spring of 2000 I tested neg 3 times, all during the 1990's. The first time I was given a few brochures which I didnt read. No counselling. The second and third times, no counseling, no brochures, no nothing.

Offline Blixer

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Re: What ever happened to councelling after diagnosis?
« Reply #2 on: December 05, 2007, 11:58:29 AM »
ga and allopathicholistic:   I think it is kind of hit and miss. I have talked to individuals who did receive some counseling. Like both of you, the bomb was dropped on me and no counseling was ever offered. I'm not sure if it was expected that I seek the counseling or what.  I actually did ask for counseling and was simply given a listing of potentially people I could contact but was told they didn't how if any of them actually did HIV counseling.  Maybe this is part of the reason we still don't seem to have the spread of this disease under control.
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
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10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline J.R.E.

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Re: What ever happened to councelling after diagnosis?
« Reply #3 on: December 05, 2007, 08:07:17 PM »
Hello There,

I can tell you that I didn't receive any counseling, after my diagnosis in 1985. I had mentioned this before, after I was handed my diagnosis, I was told to exit through the rear door of the County Health Dept. Building. They handed me a few pamphlets, But I was told nothing verbally about counseling.Remember, the year was also 1985, I think it also mattered what city you lived in. If you lived in a larger city at that time, you probably had a better chance at getting some counseling.


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline J.R.E.

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Re: What ever happened to councelling after diagnosis?
« Reply #4 on: December 05, 2007, 08:16:39 PM »
.
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline allopathicholistic

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Re: What ever happened to councelling after diagnosis?
« Reply #5 on: December 06, 2007, 02:26:13 PM »
Those "few" brochures were more like two brochures or even just one.  It was 1995 or so so I don't really remember. But I do know I definitely needed more than just brochures.

In the December issue of POZ there is a Survey. It says 56% of people did not receive any counseling when they tested HIV positive and 6% were given a sedative.
http://www.poz.com/articles/hiv_statistics_feature_2111_13447.shtml

Offline OneTampa

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Re: What ever happened to councelling after diagnosis?
« Reply #6 on: December 08, 2007, 01:01:02 PM »
I understand the comments about HIV+ diagnosis and counseling.  I received counseling when I was diagnosed 21 years ago.  I remember that the case worker also asked me if I had any questions and how I felt. She even held my hand. She also gave me a few pamphlets and a telephone number to call.  This was in a major metropolitan area.  Nowadays, a number of community initiatives although well meaning in speaking out about HIV, offer rapid testing locations and information in their PSAs.  One rarely hears, however, that counseling will be provided to those who receive their HIV results from those rapid testing places.  It appears that if someone gets a positive result for HIV, they must find the strength to seek counseling on their own once they pull themselves together.
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaŪto frito."

Offline jabez

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Re: What ever happened to councelling after diagnosis?
« Reply #7 on: December 09, 2007, 01:40:29 PM »
I guess we're on our own, when it comes to advice and comfort.  My general practitioner called me on my cell phone and gave me the diagnosis.  I think his exact quote was, "Good morning, sport!  I'm afraid I've got some bad news for you!  Your HIV test came back positive."  He rattled off a few comments about protease inhibitors, and assured me that "AIDS ain't as bad as it used to be, sport -- you've probably got a lot of years left."  He then scheduled an appointment for me to see an Infectious Disease specialist.  But it was a full month before I met the ID doctor, and during that month I received no support at all from anyone in the medical community.  In fact, during that month, I was required to report to the county health department, where I was interrogated about previous sex partners, etc.  There was certainly no support offered -- just a bunch of nosey questions, often asked in very judgemental tones.  (I understand the necessity of that step, but it wasn't handled in a very pleasant manner.)  In all fairness, my ID doctor has repeatedly offered counseling, support groups, etc.  But for that first month -- when I was in the greatest need of help -- AIDS MEDS was about the only place I could turn.   
Sept 2007 -- CD4 = 68; VL = 469,000
Started Atripla Sept 21, 2007
Nov 2007-CD4=217;VL=332
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Jan 2013-CD4=447;VL=<20
Jul 2013-CD4=406; VL=<20

Offline TriniGemini

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Re: What ever happened to councelling after diagnosis?
« Reply #8 on: December 13, 2007, 10:03:23 PM »
  Has the medical community forgot that this disease also affects a person mentally, not just physically? 

I'm not sure about the medical community per say but I know that federally the government has reduced funding ( at least in CT ) while expecting organizations to offer services to the same amount of people (& more), some services have had to be reduced and even stop what they used to offer. More people are falling through the cracks. It sucks !!!


~* Trini *~


Offline strykern

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Re: What ever happened to councelling after diagnosis?
« Reply #9 on: December 13, 2007, 10:20:33 PM »
I guess we're on our own, when it comes to advice and comfort.  My general practitioner called me on my cell phone and gave me the diagnosis.    

Wow.. that brought back a memory.   I got tested by a doctor on a follow up visit after a procedure.  He called late on a Friday afternoon and said, "Bad new here, test came back positive.  You need to find a doctor that specializes in AID's.  Need me to call you in a valium prescription?"

I said yes and that was the last I heard from the pr..ck.
It is what it is...

I am what I am...

Offline Matty the Damned

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Re: What ever happened to councelling after diagnosis?
« Reply #10 on: December 13, 2007, 10:36:38 PM »
You mean you didn't get your valium?

MtD

Offline jason304

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Re: What ever happened to councelling after diagnosis?
« Reply #11 on: December 14, 2007, 12:58:40 AM »
I think they should offer some type of counseling or group or something after they give you that type of news.  It was a major blow to my world when I found out the news I was part of a new club I didn't want to be in.  All they did was say what would you do if you found out you were positive would you think about suicide?  Hell yeah was a thought of it and the thought that my pregnant wife was going to kill me for the situation I got myself into.  But I told them no I wouldn't do it that with my luck the moment I would they would find the cure.  Think it has something to do about an already taxed system that they don't offer any "next step" things to do.
« Last Edit: December 14, 2007, 01:20:26 PM by jason304 »

Offline strykern

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Re: What ever happened to councelling after diagnosis?
« Reply #12 on: December 14, 2007, 06:52:46 PM »
You mean you didn't get your valium?

MtD

My momma didn't raise a fool!  I snapped up that offer!
It is what it is...

I am what I am...

Offline OneMoreGuy

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Re: What ever happened to councelling after diagnosis?
« Reply #13 on: January 30, 2008, 12:49:51 PM »
I lived in West Hollywood during the late 80s when condoms were being passed free of charge at every gay establishment in order to curve the spread of HIV. However, although I met many people who had seroconverted, most of them received no formal counseling to help them deal with their new HIV status.

During the 90s, I lived in San Francisco. The health clinic I visited every six months to get tested did offer initial counseling to those who became infected, but only to the point of giving them a chat as to what to expect and referring them to a mental health professional in the event they needed to talk to someone about how they felt.

Being a psychologist myself, most of my friends who became infected over the ten years that I lived in SF came to me for advice. And they did complain that the State offered no real help to those who were becoming positive.

When I became positive, my doctor simply said, 'Well, your test results came back positive. We need to run some blood tests to see where your numbers are at.' I had not problem with the direct matter-of-fact approach, but I would not have used the same approach with other patients.

However, the reality of how many people are not ready to hear the words 'you are HIV positive' became again clear to me when our neighbor's brother was told he was HIV and shortly thereafter he tried to kill himself and had to be immediately treated for depression.

It made me see how 20+ years later; most general practitioners (MDs) still do not know how to deal with informing their patients that they have seroconverted.

Psychologist, PhD
Counseling patients with HIV since Jan 1991
HIV since Dec 2005
There are three parts to any successful relationship (platonic or romantic): trust, honesty and communication

Offline Iggy

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Re: What ever happened to councelling after diagnosis?
« Reply #14 on: January 30, 2008, 12:54:42 PM »
However, the reality of how many people are not ready to hear the words 'you are HIV positive' became again clear to me when our neighbor's brother was told he was HIV and shortly thereafter he tried to kill himself and had to be immediately treated for depression.

It made me see how 20+ years later; most general practitioners (MDs) still do not know how to deal with informing their patients that they have seroconverted.


Amen.

Offline sadman44

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Re: What ever happened to councelling after diagnosis?
« Reply #15 on: January 30, 2008, 03:08:55 PM »
Try getting your Diagnosis from a blood bank via certifeid letter. That happened to me in 1988, I just recently gotten discharged from the US Navy and had the HIV test upon discharge and was unaware the HIV test was still pending. After being devistated from the certified letter stating I Tested Positive for HIV I also found out I was exposed to Hep b so now I deal with a dual diagnosis. Counseling should always be used no matter the date or year of diagnosis. I am an advocate for such things as Counseling and HIV Education.

Offline BT65

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Re: What ever happened to councelling after diagnosis?
« Reply #16 on: January 30, 2008, 07:03:30 PM »
Try getting your Diagnosis from a blood bank via certifeid letter. That happened to me in 1988, I just recently gotten discharged from the US Navy and had the HIV test upon discharge and was unaware the HIV test was still pending. After being devistated from the certified letter stating I Tested Positive for HIV I also found out I was exposed to Hep b so now I deal with a dual diagnosis. Counseling should always be used no matter the date or year of diagnosis. I am an advocate for such things as Counseling and HIV Education.

Wow, that's a nasty way to be informed.  Good for you for advocating! :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline OneMoreGuy

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Re: What ever happened to councelling after diagnosis?
« Reply #17 on: January 31, 2008, 01:17:54 AM »
I think overall, doctors and those who inform people that they now have a certain medical condition need to be trained as to how to let their patients know of such diagnosis.

Unless the doctor is a close personal friend, they tend to believe the best approach is the matter-of-fact direct 'this is what you now have' and 'this is what you need to do next' way of information.

I have seen this happen not just with HIV patients but also with cancer patients too.

I had many patients come to me and cry and complain about the insensitivity of their doctors and/or case workers. It is a lousy reality of our medical establishment.
Psychologist, PhD
Counseling patients with HIV since Jan 1991
HIV since Dec 2005
There are three parts to any successful relationship (platonic or romantic): trust, honesty and communication

Offline Pepino2

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Re: What ever happened to councelling after diagnosis?
« Reply #18 on: February 06, 2008, 11:45:42 PM »
Same here ...no councelling......left to myself essentially to figure the implications of HIV on myself...and on others.

What strikes me in this post is our common lack of councilling AND the increased attempts at "legalizing" and involving the legal system in managing hiv transmission and legals aspects.  I am appaled honestly.

How can society blame somone who was left to him/her self to figure out all of the ethics surrounding HIV?

What a shame. 

Pep

Offline sharkdiver

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Re: What ever happened to councelling after diagnosis?
« Reply #19 on: February 09, 2008, 08:44:54 PM »
Counseling? what counseling

geesh in 1985 all I got were some pamphlets about nutritions, getting a doctor and beautiful brochure about a funeral home to make arrangements.  But that was back when you were given an automatic 18 months to live prognosis.
I certainly hope there would be much more advancement in this area from what I'm reading.

Sharkie

Offline Snowangel

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Re: What ever happened to councelling after diagnosis?
« Reply #20 on: February 09, 2008, 09:41:53 PM »
I guess I was one of the lucky ones.  I had gotten tested at the city testing place. I still remember the guy who told me my status.  He was such a sweetheart, he even drove me and introduced me to my ID Doc and nurse and this was back in 94.  The one thing I can say about this disease I have been able to meet some pretty amazing people that I otherwise would not have and then some total assholes too :)  Im sorry to hear what you guys had to go through.
Snow
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

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Offline redhotmuslbear

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Re: What ever happened to councelling after diagnosis?
« Reply #21 on: February 10, 2008, 09:23:32 AM »
I have had many of these same concerns for years.  It is as if the change of HIV/AIDS from a terminal illness to a "chronic manageable disease" left the newly diagnosed in the same limbo known by people with other diseases... here's your diagnosis and a few brochures, good luck!
"The real problem is not whether machines think but whether men do." - BF Skinner
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Offline PeteNYNJ

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Re: What ever happened to councelling after diagnosis?
« Reply #22 on: February 14, 2008, 07:16:47 PM »
I think it depends on the clinician.  My doctor was cool but he deals with a lot of HIVers so knows the deal.  I have dealt with many clinicians, usually in ERs or special procedures, and they are so niave

I had an intern telling me I should be on meds and I brought up the CDC guidelines on my blackberry.  She at least acknoledge that she spoke out of turn.

Offline riverlassie

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Re: What ever happened to councelling after diagnosis?
« Reply #23 on: March 07, 2008, 07:12:23 PM »
That is where support groups come in. And good positive support group of others LIVING with being pos is the best counseling .
Worrying is like a rocking chair. It gives you something to do but doesn't get you anywhere.

Offline risred1

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Re: What ever happened to councelling after diagnosis?
« Reply #24 on: March 13, 2008, 04:00:27 PM »
I guess what this all means is that after you receive bad news about something, that the person offering the news should be obligated to offer counseling or where to go to get it.

But lets look at this from the bigger picture of all diseases. I, as I'm sure all of us who are poz, know that with the Stigma associated with HIV, there is more to it than the "average" disease that one might be diagnosed with. However, how are folks who have to be told equally or worse news about a illness that can be immediately terminal are handled?

Cancer, MS, Alzheimer's, ALS, Heart Failure, Renal Failure, etc. What should the expectation be from the person who has to deliver the news?

How about Doctors in emergency rooms who have to tell loved ones about the patient who didn't make it.

We all deserve compassion when told bad news, but that doesn't mean the HIV'r should be privileged over other class of illness and deserves special handling. Nor in our unequal health system can such a thing be imposed. Bottom line, the money comes from some where and when costs are cut, guess where they cut it, where things may be viewed as non essential.

More and more we need to be self reliant and to seek out care when we need it. Resources do exists, groups do exist, support does exist, but increasingly you have to initiate the search and execution on your own. Unfortunately you do not get a care manager, until you get to your specialist to whom you can ask questions about where you can get support.

So we know all this.

The point is, the idea we "should" have counseling provided when we are told our diagnosis is, quite frankly, an issue of entitlement. Then if we as HIV Poz folks deserve this, then really, extended view would be all bad news should be accompanied by counseling. I know the stigma, but I also know that there are reasons for the stigma. Making HIV a very special disease by providing above and beyond type services actually acts to be a part of making the stigma. The fact is that the news about treatment and how science is advancing against HIV is in fact changing the reality of the disease. And in that reality is how we need to be changing our perspective.

--------

FYI - my diagnosis was no different. I got a call from my doctor. They are upbeat on purpose. That is a kind of counseling I suppose. i was told that things have improved and that i should see a specialist as soon as possible. Doctors will answer questions if you have them. If your in shock, and my head was certainly spinning, you may not know what to say or do. But after, one has to start pulling it together and get to the specialist. After the initial news, and after I had a think, I started using the Internet to locate a specialist etc. Sought out the news. i did not seek counseling even though I knew that there were groups I could join for no cost, nor did I make calls to crisis hotlines or centers so i cold talk to someone. After I saw my specialist, certainly i was better prepared to engage in a discussion about the state of the HIV treatment and my current health standing. I did get a resource list, but I had to engage in order to have.

Ultimately for me, I did without. Like many bad things that happen in life, one copes as one can. And I would have reached out if I needed too. I have been in therapy before so I am not against it by any means. I took the news and the message from my doctors about the state of treatment for HIV to heart, so to speak, and concluded that I needed to make the most of my day to day life and get on with it as best i can. I know that not everyone can do this, so the best I can ever offer in a forum is that, If you need help, Please seek it out as best you can. Use the forum's and the Internet for resources that you can contact to see what services at what costs can be provided. Ask others for assistance and guidance. Educate yourself about HIV! (Knowledge is Power). Bolster yourself in knowing that many long term survivors are in fact surviving and even thriving. And that bad news, and there is always bad news, is something that is a part of living with HIV and that as long as your here, your here trying to make the best of it as you can.


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Offline sharkdiver

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Re: What ever happened to councelling after diagnosis?
« Reply #25 on: March 14, 2008, 04:56:47 PM »
hmmmmmm

Offline sharkdiver

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Re: What ever happened to councelling after diagnosis?
« Reply #26 on: March 14, 2008, 07:58:18 PM »
Yes, educating yourself about HIV is important to your mental health.

But is especially important to get and discuss the information with professionals. There is a lot of false information and garbage out there, especially on the internet. Don't  just depend on the recent "studies"; really explore what the study was, the population it used, etc.. There are many 'studies' out now about herbal supplements and vitamins ,but they are structured around anecdotal evidence. As one of my statistic professors always said  "Anecdotal means  don't mean shit"

Compassion does not require money, privilege, or entitlement.

Offline BT65

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Re: What ever happened to councelling after diagnosis?
« Reply #27 on: March 14, 2008, 10:15:17 PM »
I don't think the question was about treating HIV as an entitlement.  Usually when doctors give bad news to patients, such as cancer etc., they are extremely compassionate.  HIV should be treated as such, and no less important than the others.

And I agree with Shark about doing some exploring.  What works for one person doesn't work for another and these things should not be touted as what another should do. 
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Offline ga1964

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Re: What ever happened to councelling after diagnosis?
« Reply #28 on: March 17, 2008, 02:25:09 AM »


We all deserve compassion when told bad news, but that doesn't mean the HIV'r should be privileged over other class of illness and deserves special handling. Nor in our unequal health system can such a thing be imposed. Bottom line, the money comes from some where and when costs are cut, guess where they cut it, where things may be viewed as non essential.

So that would mean that you think alchoholism and drug addiction are deseases that deserve to be "privileged" over people with HIV ?  They recieve access to support groups and counceling.  Why is it too much to ask for support and councelling when you are told that you have a life threatening desease weather it be HIV, cancer, MS. or MD. (you left that one out also.)  That kind of thinking is why there is so much fighting over legalizing same-sex marrages.  (Oh, NO!  FAGS want special treatment.)

I never said that people with HIV should be "privileged" over other classes of illness.  I just think that if I were a doctor's relative or friend, they would have been more compassionate in giving me the news and would not have given it to me right before I was to go into sergury.  Even my Mother got upset at my doctor for dropping the bomb on me at that time.

Even though I known that there have been improvements in HIV treatment, it still felt like my doctor was telling me my days were numbered and too bad for me.  It made me feel like why should I go through surgery and all the pain of recovery?  Why not just let me die and save the money the doctors and hospital recieved, and leave it for my partner instead.

Offline AndyArrow

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Re: What ever happened to councelling after diagnosis?
« Reply #29 on: April 02, 2008, 05:10:10 PM »
I was diagnosed about ten years ago in Chicago and the doctor simply told me I tested positive and that he didn't know enough about it and I needed to find another doctor.  There were no pamphlets, phone numbers or anything from him.  Fortunately, I eventually (after a few misses) found a good doctor and I'm still here. 

I understand that doctors can't provide counseling to everyone but they should at least let people know that there is help out there.

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline maddalfred

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Re: What ever happened to councelling after diagnosis?
« Reply #30 on: November 25, 2008, 06:57:45 PM »
My primary care physician had his nurse come in and read off my test results to me. He apparently had more important issues to discuss with someone else at my appointed time to see him. The surreal part was how robotic and clipped she sounded as she read off the results of multiple tests my doctor had ordered, finally coming to the HIV and Hep C results. This was just six months ago and this nurse gave me the impression that she did not understand why I seemed to disintegrate before her very eyes. She left the little room and did not come back for about ten to fifteen long minutes and then only to invite me to find a specialist and schedule a follow up with Doctor Primary Care on my way out.

I have yet to receive one response to a post I made here looking for others in my situation for face to face support visits. Hell, no one from here (Austin) has even bothered to IM or email me. Other than Waterloo counseling that I finally broke down and went to about a month ago and this forum, I HAVE no support. If there IS any support or support groups in Austin they must be by invitation only for all I know. It tends to make the depression become even more "deserved" in my pea sized little brain. Please bear in mind that I am VERY grateful to have found this site and have already benefited from signing up here.

Not sure how I formed the opinion, but I feel like that these days the disease has become "manageable" in the eyes of the medical community and they may view additional counseling or support, whether on an individual basis or one on one as being the same as if one had diabetes. Maybe they feel we overreact or all of us are just drama queens. Just a thot.
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Offline ga1964

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Re: What ever happened to councelling after diagnosis?
« Reply #31 on: November 26, 2008, 12:24:55 AM »
Maddalfred,

Thursday will make 2yrs. since I went into the hospital for 6wks. and learned my status.  It has taken me that long to find counseling in my area, even though I'm not sure if my therapist is very knowledgeable about HIV and the stigma that comes with it here, but she has helped in other areas of my F-up life. 

It took me a while, but after asking my ID. about who to contact with a program like ADAP, he gave me a contact to a case worker and she got me into therapy.  I'm not quite sure if its going to be enough or if I might have to find someone that specializes in HIV cases.

I would think that a city as big as Austin would have support groups with the Health Dept.  I have been to Austin, but I would like to see it and Dallas some day.

Good luck in your search.  I hope you find a support of some sort, but remember there are a lot of great people here that care and will help encourage you when your feeling down.  I don't know if I would have made it this long if it were not for the people here.  And I'm sure I'm going to need some help myself over the next several weeks.

Take care.

Offline dearestgrandson

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Re: What ever happened to councelling after diagnosis?
« Reply #32 on: March 21, 2009, 11:05:59 PM »
The clinics near me give counseling. My family and I live in a very wealthy area.

My grandson told me that when he was diagnosed that they immediately got him hooked up with a case worker, and that the case worker got him hooked up with ADAP. They made sure he had health insurance and if he didn't they offered to help him get on the states high risk plan, ADAP paid for the premiums for him. I think it really depends on the funding the clinic has. I live in one of the top 20 wealthiest counties in the entire United States. We have a lot of funding for social services, even though they are not used to the degree that people use them in poorer areas.

Offline positivmat

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Re: What ever happened to councelling after diagnosis?
« Reply #33 on: March 22, 2009, 08:31:52 AM »
I continue to be shocked at how hard it is to connect with people face to face for hiv support. I live over an hour from nyc and all the support seems to be down there but the local numbers are among the highest in the nation. My first call was to one of the 4 aso's close by. The case worker called me back after my third call saying that there was no room and that her group had some people in it for 30 years. She then whispered into the phone like people do about cancer "a lot of people have it". I said yea I know almost 40 million. I am waiting now almost 2 weeks for a call of other resources. I know that this represents a system that is overwhelmed. I think I got this from a guy who had it for a while who was lonely and scared and will never admit he is poz. I think he needed help and I see myself floating out there too. I have this need to talk to other hiv positives face to face about this. The forum has been the most important part of my support system so far. Last week, I found a monastery nearby that has a support group that meets once a month and I can't wait to go. I think it should be out there if they want to keep more people from costing $600k for a lifetime. It seems like a small investment.

Offline Miss Philicia

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Re: What ever happened to councelling after diagnosis?
« Reply #34 on: March 22, 2009, 10:29:07 AM »
Have you tried calling the GMHC hotline to make sure you're accessing everything in your area?  Maybe these local places are missing something, but yeah generally it sucks if you live that far outside of an urban center, and that's just something you're going to have to accept I'm afraid.  It's a simple matter of numbers, geography and resource allocation with what funds there are.  There are plenty of people who travel an hour to attend the support group in Philadelphia that I go to.

If you can't wait for your monastery group I know of an excellent place in NYC (I lived there for 15 years) and they do "big group" sessions that do not require registration and you can just show up.  Feel free to PM me.  Things could be worse -- at least you don't live somewhere that it would take 4 hours each way to find a decent support group.

btw, I work closely with the moderator of our support group and am, in fact, the substitute moderator should he be ill.  For every session there are always a fair amount of people on the roster that are contacted to attend, indicate that they will, and then never show up.  It's very difficult to operate these groups when the attendees are that sketchy.  I realize everyone has their own issues, but keep in mind that's what group organizer are dealing with.  I know it doesn't apply to you but it's just something to know.
« Last Edit: March 22, 2009, 10:34:26 AM by Miss Philicia »
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Offline decayingsinner

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Re: What ever happened to councelling after diagnosis?
« Reply #35 on: March 24, 2009, 11:17:23 PM »
  It's a simple matter of numbers, geography and resource allocation with what funds there are.  There are plenty of people who travel an hour to attend the support group in Philadelphia that I go to.



I live about 10 miles north of King of Prussia and I'm sure there are a lot of people that travel further than I do.  I would love to join a support group, but do not want to have to travel an hour each way once per week. I wish there were support groups in the Philly suburbs, but I haven't found any.

Offline Miss Philicia

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Re: What ever happened to councelling after diagnosis?
« Reply #36 on: March 24, 2009, 11:32:31 PM »
Fine, that's definitely your choice.  It just means you go without support I guess.  Also, for some context, our group is monthly not weekly.  I doubt any of these people would drive an hour every single week, but who knows.

I used to travel an hour to an HIV doctor every other week for three years, but I did it because I had to.
"Iíve slept with enough men to know that Iím not gay"

Offline Dwayn20

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Re: What ever happened to councelling after diagnosis?
« Reply #37 on: March 27, 2009, 11:20:21 AM »
From 1988 to 1991 no one offered any councelling an then I had a friend that worked at the hospital an help me contact an Clinic in New Orleans then I got to learn about the desease an recieved some councelling an the whole nine yards.Before that nothing.
Dwayn20(Scooter)

Offline decayingsinner

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Re: What ever happened to councelling after diagnosis?
« Reply #38 on: April 02, 2009, 09:43:54 PM »
Fine, that's definitely your choice.  It just means you go without support I guess.  Also, for some context, our group is monthly not weekly.  I doubt any of these people would drive an hour every single week, but who knows.

I used to travel an hour to an HIV doctor every other week for three years, but I did it because I had to.

I do have family and friends for support, and the wonderful people from this forum.

Offline ga1964

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Re: What ever happened to councelling after diagnosis?
« Reply #39 on: April 09, 2009, 01:19:04 PM »
I guess what this all means is that after you receive bad news about something, that the person offering the news should be obligated to offer counseling or where to go to get it.

But lets look at this from the bigger picture of all diseases. I, as I'm sure all of us who are poz, know that with the Stigma associated with HIV, there is more to it than the "average" disease that one might be diagnosed with. However, how are folks who have to be told equally or worse news about a illness that can be immediately terminal are handled?

Cancer, MS, Alzheimer's, ALS, Heart Failure, Renal Failure, etc. What should the expectation be from the person who has to deliver the news?

How about Doctors in emergency rooms who have to tell loved ones about the patient who didn't make it.

We all deserve compassion when told bad news, but that doesn't mean the HIV'r should be privileged over other class of illness and deserves special handling. Nor in our unequal health system can such a thing be imposed. Bottom line, the money comes from some where and when costs are cut, guess where they cut it, where things may be viewed as non essential.

More and more we need to be self reliant and to seek out care when we need it. Resources do exists, groups do exist, support does exist, but increasingly you have to initiate the search and execution on your own. Unfortunately you do not get a care manager, until you get to your specialist to whom you can ask questions about where you can get support.

So we know all this.

The point is, the idea we "should" have counseling provided when we are told our diagnosis is, quite frankly, an issue of entitlement. Then if we as HIV Poz folks deserve this, then really, extended view would be all bad news should be accompanied by counseling. I know the stigma, but I also know that there are reasons for the stigma. Making HIV a very special disease by providing above and beyond type services actually acts to be a part of making the stigma. The fact is that the news about treatment and how science is advancing against HIV is in fact changing the reality of the disease. And in that reality is how we need to be changing our perspective.

--------

FYI - my diagnosis was no different. I got a call from my doctor. They are upbeat on purpose. That is a kind of counseling I suppose. i was told that things have improved and that i should see a specialist as soon as possible. Doctors will answer questions if you have them. If your in shock, and my head was certainly spinning, you may not know what to say or do. But after, one has to start pulling it together and get to the specialist. After the initial news, and after I had a think, I started using the Internet to locate a specialist etc. Sought out the news. i did not seek counseling even though I knew that there were groups I could join for no cost, nor did I make calls to crisis hotlines or centers so i cold talk to someone. After I saw my specialist, certainly i was better prepared to engage in a discussion about the state of the HIV treatment and my current health standing. I did get a resource list, but I had to engage in order to have.

Ultimately for me, I did without. Like many bad things that happen in life, one copes as one can. And I would have reached out if I needed too. I have been in therapy before so I am not against it by any means. I took the news and the message from my doctors about the state of treatment for HIV to heart, so to speak, and concluded that I needed to make the most of my day to day life and get on with it as best i can. I know that not everyone can do this, so the best I can ever offer in a forum is that, If you need help, Please seek it out as best you can. Use the forum's and the Internet for resources that you can contact to see what services at what costs can be provided. Ask others for assistance and guidance. Educate yourself about HIV! (Knowledge is Power). Bolster yourself in knowing that many long term survivors are in fact surviving and even thriving. And that bad news, and there is always bad news, is something that is a part of living with HIV and that as long as your here, your here trying to make the best of it as you can.





I never said that people with HIV should have special treatment, but to have a doctor come in the morning of surgery and drop a bomb like that and then tell me good luck in surgery, to me, was very uncompassionate and careless.  It made me want to cancell surgery and just go home and die. 

I know that when HIV first hit even the local Health Dept. would offer counselling even if the results came back neg.,  just to help out what the patient had been thru the last three or four weeks waiting on the results to come back.  Now it's just " You tested Poz., Take these pills and I'll see you in 3 months. 

I have looked on the web and here for info for support groups in my area, and the only listing is my ID.  He did tell me on my first appointment with him that there had been a lot of advances in treating HIV and it no longer was a "death sentence", but it still did not help with coping that I had a potentially "deadly disease".  For those that have been able cope and come to terms with their diagnosis without counselling, That's great, but for the majority of us that live in small rural towns, a little compassion and concern would be appreciated, especially from you ID>  They should be a list in ID. offices that would provide info for support groups, even if you have to drive a little to get to one. 

Other than telling me that I would have quarterly blood test to monitor my numbers and make sure that my meds have not destroyed my liver or any other vital organs.  That was the extent of compassion that I received.  I'm sure that if I had been diagnosed with Cancer, MS, MD, Or any other "respectable" terminal illness, there would have been some support group available.  Hell they have support groups for quitting smoking or drinking, but not for HIV diagnosis.  It just shows that this disease is treated like you should go home and wait to die and god forbid some one find out. 

They even have support groups for those that are having financial difficulties due to the depression we are in, and that's not even life threatening for the most part.  I have never heard of someone being rejected by family and friends if one becomes homeless, but HIV is a different story.  A lot of people loose family and friends when finding out they are HIV+, so why is it asking too much to have a place to turn to for support when finding out you have tested Poz. for HIV? 

Has the world become so callouse, as to hit you with a bomb like HIV and not have someone to help with coping with the diagnosis.   

Offline moratorium79

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Re: What ever happened to councelling after diagnosis?
« Reply #40 on: May 13, 2009, 05:40:50 AM »
This thread's title is a question I have asked myself over and over.  Where is the 'care' in 'patient care'?  When did we become case numbers instead of human beings? 

I am relieved and appalled to know I was not the only one to receive my diagnosis over the phone (while at work, no less, a stress free day was to elude me).  I completely understand and agree that we should be self driven when it comes to receiving whatever kind of care we need, but it is hard to drive yourself in any positive direction when your world has stopped spinning, when the rug is pulled out from what seems is only you.

I needed to have things explained to me.  I needed to know what my options were.  I needed to be reassured that I wasn't going to die immediately.  I needed to know exactly what was happening inside my body.  I needed to know where I could go for support, for care.  Instead I got a "Well...take care" and a dial tone in my ear.

I talked with one of my closest friends about this, and the first words out of her mouth were "WHY DID THEY NOT OFFER YOU ANY SUPPORT?"  I suppose I wasn't paying enough?  Her second statement was "Well lucky for them you aren't the type of person who just goes and offs themselves after receiving news like that."  Which brings up a whole other plethora of concern as to the well being of patients, because surely there are people who in fact DO reach for the revolver or pills or whatever it will take when faced with something of this magnitude.

What this experience has taught me is that you have to help yourself, as difficult as it may seem when you're secluded in terrified limbo.  Laying in the dark for days just won't do, though you can certainly do that.  Even one little step forward helps the haze lift.  It's just appalling how many people have to find their footing on their own.

Whoops, I accidentally ranted.  My apologies.
*these are not times for the weak of heart*

Offline Dwayn20

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Re: What ever happened to counselling after diagnosis?
« Reply #41 on: May 13, 2009, 05:57:42 AM »
You had every reason to rant. I thought they are not allowed to give that info over the phone. They don,t know if they are talking to the right person. What happen to privacy. The Gaul I thought things had changed since the time I got tested in 1988 sounds like things have turned for the worst. If I were you I would contact the local Aids organization and find out from Aids Law what the hell is going on.
Scooter

P.S.moratorium79 some one should known better and while your at work.Also if you need a friend that has been there you can contact me.
« Last Edit: May 13, 2009, 05:59:30 AM by Dwayn20 »

Offline Miss Philicia

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Re: What ever happened to councelling after diagnosis?
« Reply #42 on: May 14, 2009, 04:21:40 PM »
I'm kind of sure that if you have cancer you might be informed by your doctor over the phone.  I'm not really sure why teh AIDS needs kid gloves, not in the year 2009 or really any time since '96 or '97.  I also alway kind of fail to understand, particularly in the case of either gay people or IV drug users, both of which know full well the subject of AIDS (or should) why, also in the year 2009, they're not aware that an HIV diagnosis isn't a death sentence.  I mean *hello* what's the deal, Heloise?  And yeah, I even expect a bumfuck 18 year old in Idaho to be able to access information on the internet.  I'll happily concede exceptions for those people outside of those groups (a little bit), the poor, children under 17 and residents of third world countries.

If you're a sexually active gay person over the age of 18 and not getting regularly screened for HIV as well as other STDs then it's your own damned fault.  And I'll gladly lump myself in that category because I wasn't tested for at least the first five years of receptive anal sex.
"Iíve slept with enough men to know that Iím not gay"

Offline ga1964

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Re: What ever happened to councelling after diagnosis?
« Reply #43 on: May 15, 2009, 02:34:49 PM »
I'm kind of sure that if you have cancer you might be informed by your doctor over the phone.  I'm not really sure why the AIDS needs kid gloves, not in the year 2009 or really any time since '96 or '97.  I also always kind of fail to understand, particularly in the case of either gay people or IV drug users, both of which know full well the subject of AIDS (or should) why, also in the year 2009, they're not aware that an HIV diagnosis isn't a death sentence.  I mean *hello* what's the deal, Heloise?  And yeah, I even expect a bumfuck 18 year old in Idaho to be able to access information on the internet.  I'll happily concede exceptions for those people outside of those groups (a little bit), the poor, children under 17 and residents of third world countries.

If you're a sexually active gay person over the age of 18 and not getting regularly screened for HIV as well as other STDs then it's your own damned fault.  And I'll gladly lump myself in that category because I wasn't tested for at least the first five years of receptive anal sex.


How callous can you be.  Yes, anyone over the age of 18 (and probably younger) knows the risk of STDs if they are sexually active, but that should not be an excuse to treat them as if they had a cold.  (Take two aspirins and call me in the morning.)  If a woman goes in for a mammogram and is told that she has breast cancer, should she not be given the information with some sort of compassion?  Like HIV, Breast cancer is not necessarily a death sentence, but it still kills many women every year.  Every doctor should have to take a course in giving such diagnosis with compassion and awareness for the feelings of the patient. 

Telling someone that because they know the risk, that they should be able to handle the diagnosis and accept the situation and is cold and heartless.  Most of the people that are infected by HIV, did not get infected on purpose.  Why is it so much to ask for people, especially from health professionals, to have a little bit of compassion.  How would you like it if your doctor told you on your next visit,  you had swine flu and because you have HIV, that you were at a greater risk of it killing you.  Wouldn't you like for them to be compassionate delivering the news, or would you be fine with them just saying you could die in the next week, bye?

I never asked anyone to tell me it was not my fault for getting infected,  I accept that I was the one that mad some bad decisions that put me here, I just would like for my doctors to have a little humanity when delivering devastating new, such as becoming HIV+.  Is that so much to ask?  If civilization has become that callous, then maybe the time has come to put down anyone that has a life threatening illness, but then how would the doctors afford to buy their BMW's, and massions.  What happen to the Hippocratic oath that medical professionals take, or has that just become a meaningless ritual they go thru to get their license to practice?

Its time that we as human beings,  practice what so many people preach.  Love your neighbor as you would love yourself.  Help others in need instead of stepping on them.  A little humanity is not much to ask for, unless you have become a cold, heartless ass. 

 


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