frustration

[aztecan]

Sometimes I become frustrated.

I deal with quite a few people who discovered they have HIV in the past five years or so. Some, just a year ago.

My problem is so many seem so ambivalent to the retrovirus now waging war in their bodies.

I know one young man, a mere 22, who, just two months ago, was in the intensive care unit of the hospital battling PCP.

I would think this would have been something of a wake-up call. But this week, I accompanied him to a doctor visit (at his request). He knew the doc was going to recommend he begin HAART. Why he wasn't already on HAART is a rather lengthy story I won't go into here.

So, what does this guy ask me? "Do you think the doctor would be upset if I didn't start meds until the end of summer. I have a trip planned and I don't want to mess up my summer with meds or side effects."

My response: " Well, your CD4 is below 200, viral load is more than 100,000, and you are just recovering from PCP.  It probably isn't a good idea to wait."

In another instance, another young man, this time 27, tells me, "Don't send mail to my house. I don't like being reminded I have HIV."

My response, "OK, but how about getting labs done so we can see where you are and how you are doing. It's been almost a year since your last labs."

His numbers weren't terrible last year, but they were borderline. Who knows where he is now. I can understand denial to a point, but not to the degree that it is dangerous to your health.

His response, "I don't really want to right now. I'll think about it."

This same person called yesterday, saying, "I didn't want to tell you this because I hoped it would go away . . . "

Needless to say, things are going south for this guy and now he's concerned.

Another couple, both positive, have repeatedly missed doctor appointments and haven't had labs done in many months.

When I speak to them, I try to impress on them the need for regular labs because their meds (both are on HAART) need to be watched to ensure they are working and that nothing else is going on with their bodies as a result. You know, like kidney problems caused by Truvada.

The male partner says, "Well, I don't mind taking the meds,  but why see the doctor. I don't feel sick. All it does is make me feel boxed in when I am reminded about all this."

The female partner simply nods her head in agreement, with the glazed look of a deer caught in the headlights of an oncoming car.

I try to explain this is a way for them to be in control of their health, of their future together and to be around to watch their child grow up. I think my words swooshed over their heads, never sinking in.

I have had this discussion repeatedly with them.

Could it be I have been living with this stuff too long and expect others to understand things they way I do?

Am I taking the wrong tack?

The frustration I feel is why I limit my responses in the Living With forum. I deal with many of the questions posted there on a day-to-day basis, often with unsatisfactory results.

Which is why I am posting this here. Not because I think less of those more recently infected than I, but because I am often frustrated by the manner in which some view this disease.

I knew several people who didn't quite make it to the HAART era. They would have given their right arm for the chance to take a drug cocktail, regardless of the side effects.

Then I talk to people today who tell me things have changed, they now have a different view of HIV. Perhaps it is just me, but it seems for some this new view is that HIV is an inconvenience rather than a life-threatening disease.

Maybe it is just my frustration speaking because this has happened so much recently.

Has living with HIV been sugar coated to the point where people don't take it seriously?

I have a hard time with the "chronic, manageable" label now given it because a lot depends on what you call manageable.

It certainly isn't manageable if you don't know where you stand, eschew doctor visits and lab work and put off taking meds because you have a vacation planned, albeit the fact you were just on a ventilator with PCP.

Since when did complacency become chic?

OK, enough of my rant. But my frustration level was growing and it was either rant here or grab someone by their shoulders and shake them. Better that I rant here.

Sorry, but I needed it.

HUGS,

Mark

[AlanBama]

Mark,

I completely understand and empathize with your frustration.   And you are out there, dealing with it every day in real life....I only witness things from the sidelines (my clinic, here in the forums, etc).   The UAB clinic where L. and I get our medical care told us Monday that they have 150 new patients since January.   They are overloaded, and the staff is overwhelmed.

Where have we failed?  Why are so many people becoming infected?   Why can't we curb the spread of hiv?  It just makes me so damn sad.   And as you mentioned, so many of these newly infected ones don't want to deal with it, or take it seriously.   I place the blame for a lot of this squarely on the current administration, that will not permit honest sex information to be taught to children of the proper age.   This "abstinence only" crap is a bunch of baloney.
What will it take to make them see that it is not working? 

All of us who are dependant on "the system" for our medical care will be suffering as a result of this trend.   It frustrates me to no end.

here's a hug, my friend....(((HUG)))

Alan 

[Miss Philicia]

Some people will be in denial about anything, no matter the subject.  It's probably how they've dealt with things all of their lives, so even when they get HIV they don't change (though some do, of course).

For those of us that are very pro-active with our medical situation it can be very difficult to comprehend.

[DanielMark]

Mark,

One thing I've learned over the years is that people sometimes won't listen to what you know (from experience) would be good for them. Also, that frustrations and disappointments come from expectations. Change the expectation and you change how outcome impacts you personally. Whether these people are in denial or just indifferent, that’s the choice they’re making for their lives, no matter how upsetting it is.

From things you’ve posted in the forums you seem to be a caring and nurturing personality. Caring about people is quite different from taking care of them. When it comes to your own health being affected by the behaviours of other people, sometimes all you can do is accept what is. I think clinically they call that detachment – caring from a safe distance.

And for reading through all that blathering you get a great big (((HUG)))

Daniel

[Andy Velez]

Mark, they're lucky to have you in their lives giving them attention they are failing to give themselves. No kidding.

What you're touching on is related to what I consider to be a huge problem in terms of HIV-treatment: the lack of sufficient and appropriate attention to the emotional aspects of living with HIV. The kinds of attitudes and neglect you have described are just the tip of the problem. Yes, some of it is based on a poor knowledge of how HIV works in the body.

But mostly I think it's a shutting down emotionally altogether. In our instant gratification and materialistic world, people are just not being educated about coping with anything as tough and as real as living with HIV.

Sometimes it's actually healthy for someone to get upset emotionally. But all too often just a quick writing of a prescription for something to quiet them down is the response because emotional upset is just too intolerable and "messy" for the patient, the healthcare provider and those around the patient. And otherwise just leave everything alone and you're seeing a lot of that, Mark. Just la-de-da-ing through life until there's a real physical situation happens which (temporarily) may inject some real life stuff into the situation.  

The solution? For starters how about an expansion of services which can include both private and group support situations?  And a medical system which includes training for practicioners in dealing with emotional aspects of their patients needs. And which allows enough time at an appointment for some conversation between caregiver and patient. i

I could say much more but you get some of my drift.

Like I said earlier Mark, patients are so lucky to have you on their team.  

[englishgirl]

forgive me if you would rather i had not posted in this thread as i am not a LTS, but the welcome thread did say 'We are not excluding anyone from participating here'

i just wanted to say that i wholeheartedly agree with your points, and it drives me crazy that some people do not take what is happening seriously - whether it is from denial, flippancy or just plain ignorance. i too often refer to the LTS forum to see what i consider a realistic view of HIV.

i wish i was lucky enough to have someone like you, Mark, in my area contributing to services. one of the things i miss most from being able to interact face to face with other poz people where i live is how much i learnt from the LTS and from those who were far more badly affected than myself, because i think it is important to live the reality of this illness. unless the newly affected are taught about things like survivor guilt and the reality of living for 20+ years with a horrible disease they will not truly know the reality of their situation.

i am currently reading the wonderful 'Borrowed Time' by Paul Monette, and have previously read other similar testaments, such as the great 'PWA' by Oscar Moore. i wish everyone who has contracted HIV in the HAART age would read these books to see how lucky we are nowadays, but also know what we will maybe once ourselves have to face. if they cant face the reality how will they ever know their enemy? personally i think that knowledge makes us stronger. i have not yet had to face many challenges with this disease, but at least i know the worst and will be be prepared as best i can.

for this reason i thank you for your posts, and politely request that you LTS continue posting in the 'Living with HIV' forums, because your wisdom, experience and perspective is valued by many of us who have been on this bus for less time.

with much love and respect
xx

[mudman8]

Mark you're doing a good deed to ignorant people. Tho I remember the period off AZT and before cocktails I went to Itlay on a study trip. came home ok but the next year I eventually got so sick with PCP and just got on the new cocktails. I wouldn't put it off just because that kid wants to travel. Stupid

[Ann]

I don't know Mark, and I certainly share your frustration.

One thing that springs to mind for me while reading your post is how the initial visit with the doctor has changed. Whereas once patients were told to get their affairs in order and draw up a will, now people are told they can live to a ripe old age.

Maybe these people you deal with who are in denial should be told to get their affairs in order and draw up a will. After all, the only reason the doctors' introductory spiel has changed is because of the current methods of tracking the illness, combined with med therapy when indicated. If a person isn't availing themselves of these advances, then they may as well be living in 1983 and thus SHOULD get their affairs in order.

If you told your clients this, you'd only be speaking the truth.

Hugs,
Ann
xxx

[Dachshund]

What war? I'm afraid the indifference you experience is the very sad sign of the times. I was shocked when my doctor told me up to 40% of his patients don't adhere to his prescribed drug regime and are dismayed when an oi compels them to visit the doctor. The aids storm clouds are gathering and it ain't going to be pretty.

[dixieman]

Mark, Do not let their ignorance wig you out... You can only help those who want to be helped... their adults... help give them advice and if they take it Great and if not... move on to someone who wants to survive... sounds harsh but, its not worth stressing yourself out... be there for others who actually want help... thats how I deal with it...

[BT65]

Dearest Mark:
    I don't hang with people who don't want to do anything about their situation despite repeated requests, but if it's your work, then I guess that's not an option.  I think Daniel said it, just don't get your expectations too high about these people.  I remember being megadosed with AZT when they first started using it and having to get two blood transfusions because it dropped my hemoglobin so low.  I was always proactive about my health care, and I think like Ann said, doctors tell people a totally different thing than they used to years ago.  Some people just think they will magically last forever.  It makes me really sad to think people are like that.  But one thing that does cheer me up is that I don't go to near as many memorial services like I used to.
     I'm wishing you good things and peace always!
Betty

[allanq]

There's an interesting discussion on this very topic in the PozHealth Yahoo group: http://health.groups.yahoo.com/group/PozHealth/
The subject of the discussion is "Generation Gap."

To see the entries on this subject in the PozHealth Yahoo group, enter the search term "generation gap".

I'm not sure if you have to join the group to read the posts.

Allan

[J.R.E.]

I'm not sure if you have to join the group to read the posts.

Allan

Nope ! you don't have to be a member to read the posts, or the replies !


Ray

[bear60]

Mark....you may be a "long time survivor"....they may not be.