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Author Topic: Some negative people just don't get it!!! Tired of explaining myself?  (Read 3060 times)

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Offline jm1953

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  • Posts: 262
Hey members,

This is a clincher.  You just never know what might come out of people's mouths.  My latest jawdropper was a a friend visiting me recently over the new year accusing me the reason I am sick with bouts of nausea, fatigue, general malaise and other usual symptoms one normally experiences having been positive for 22 years, and taking tons of meds upon meds since 1996 is due to a psychological disorder.  This information was conveyed to me at a brunch the other day, because I had to bail on a new years commitment because I was sick as a dog.  He is negative and has known I've had AIDS for years.  But it seems because I was not available one night I am now in severe need of major professional help from highly trained psychotherapists.  He knows very well I have been in therapy forever, doing everything I can to stay emotionally healthy.  And then to top it off, he said another old friend of mine I know who lives out of state told him on facebook he is convinced I am a hypochondriac.

I've been made to feel guilty for being sick by friends and family on occasion when I'm not well enough to make a party or commitment.  But never before have I been called psychologically unbalanced or unbalanced just because I can't do all the stuff I used to when I was healthy.  I told him that he just doesn't get it.  To prove the point during his visit I took him to three of my doctors appointments today, one for hematology, another for a foot infection, which I found out by my physician if left untreated could have landed me in the hospital, and going to my local clinic to get my testosterone injections.  Then going to the pharmacy to pick up a strong antibiotic to take along with my 16 or more other antiretrovirals I take daily. Just a typical day we accept as being people with AIDS.

At the end of the ordeal he said he was exhausted from all of the doctor visits, and needed a drink.  And retracted most of what he said.  I don't hold this against him, however, I get very angry when people expect us to act as normal healthy beings when we are not.  And then made to feel guilty or that you have a major psychological dysfunction.

It would seem the general public, even close friends, and family, don't get it no matter how much you explain it to them.  I think the public is being complacent thinking "oh if you get AIDS it's just a matter of taking some pills each day and then get on with your business."  I think we need to get some education out there through the media or something that it's a little bit more specific than that.

I was extremely angry about this last night, but kind of taking my friend through a day in the life made a huge difference.

Don't know if any other members come across this......but as if we don't have enough on our plate this is all we need.

Anyway, thanks for letting me vent. 

Jeff
Positive 25 years. 7/21/2012 Current CD 4: 780 Viral load: less than 50. 38 to 40%
Current drug regimen, Isentress, , Emtriva, Sustiva Wellbutrin, Klonipin, Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline BT65

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Re: Some negative people just don't get it!!! Tired of explaining myself?
« Reply #1 on: January 05, 2010, 05:43:24 AM »
Hey Jeff,

Yeah, most of my friends and family don't understand.   They believe, as you stated, that it's just a matter of taking meds, and going forward.  I'm fortunate in the fact, though, that most of them don't harass or question me (or make assinine remarks like your friend) when I can't make it somewhere.  They usually just take me at my word, and it ends there.  There are some who will always wonder.  I think that was a great idea to take your friend to your appointments.  And I agree there needs to be more info out to the general public (and doctors) about living with HIV for years and years.  Sometimes people forget how it used to be, and how those of us who survived that period still have effects from it.
  Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline joejoe1972

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  • Posts: 54
  • Loving living life!
Re: Some negative people just don't get it!!! Tired of explaining myself?
« Reply #2 on: January 05, 2010, 12:36:48 PM »
Jeff my friends and family are just as bad if not worse. They have seen me in the hospital, some I have lived with and they still forget that I'm sick. They think that the "magical" pills I take will keep me alive forever. Little do they know what the daily grind we have to go threw just to be perceived as healthy, so they won't freak out when faced with the truth. I too have taken a friend on a doctors day and it made no difference in my case, needless to say that friend and I are no longer talking.I don't know if anyone can truly understand this disease and what it does to us unless they have seen it first hand and experienced the death of a loved one. I'm so glad your friend retracted the shall I say it( rather ignorant remarks) and that y'all can still be friends.

Your friend,
JoeJoe
Hiv+ since 1991, AIDS since 2001

Offline leatherman

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Re: Some negative people just don't get it!!! Tired of explaining myself?
« Reply #3 on: January 05, 2010, 01:17:30 PM »
That was a great idea to drag your friend along on a typical day of doctors and meds.  :D I bet he realized that it just isn't all that easy being sick. ;)

I think the public is being complacent thinking "oh if you get AIDS it's just a matter of taking some pills each day and then get on with your business."
that's why I keep putting my foot into those "chronic manageable" discussions. It needs to come with a caveat. It might just be manageable IF you were diagnosed early, IF you were treated on newer meds, IF you have little or no side effects, IF you didn't have any OIs, IF you don't have any complicating factors. But everyone wants to move on - you know, talking about AIDS is like so 80s - and the newbies don't want to be scared by having a terminal disease, so their defense mechanism is to say that we're just be crotchy old farts, never realizing that some 23 yr old in the hospital today with PCP is going to being having quite a rough road dealing with AIDS, at least in his near future.

Oh, if I had only been lucky enough to have been diagnosed long before 5 tcells and that huge viral load  ;)- ah but then I would be one complaining that you were just being a complainer. :D ROFLMAO

Don't forget to, as I saw at the deaths of my partners, a lot of people want to be denial. They think what they don't know about isn't happening. It's so much easier not to think of us as sick, than dealing with all the nasty complications and the implications of that. By saying you're not sick or just malingering, for them it makes you magically "not sick" and they don't have to be worried or concerned - or helpful or kind or even polite.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline jm1953

  • Member
  • Posts: 262
Re: Some negative people just don't get it!!! Tired of explaining myself?
« Reply #4 on: January 05, 2010, 10:20:00 PM »
Thanks all for your support and replies.  This topic is really an important one I think and one really needing to be explored by the media, and other sources to educate the public.  We, as long termers, are the trailblazers, and who knows what this disease does to us after having it for a long period of time, and the effects the meds have taken on us.

I think you had a good point leatherman that some of these comments come out of denial about your having a chronic or, what I really think, a terminal illness.  It is tough to deal with for someone who cares about you, and has known you for a long time.  They want you around and kind of the way they remember you were when you were well.

So maybe POZ magazine can write an article about this if they haven't already.  It would be great if another movie was made like "Philadelphia" the 2010 version.

You guys are the best, and this forum is truly my most understanding family,

Lets stay close,

Hugs,

Jeff 
Positive 25 years. 7/21/2012 Current CD 4: 780 Viral load: less than 50. 38 to 40%
Current drug regimen, Isentress, , Emtriva, Sustiva Wellbutrin, Klonipin, Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline joejoe1972

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  • Posts: 54
  • Loving living life!
Re: Some negative people just don't get it!!! Tired of explaining myself?
« Reply #5 on: January 05, 2010, 11:36:41 PM »
Hugs right back at you Jeff. I think another movie showing that people are still dying from this disease would definitely get the message across. Even better a movie about an LTS would explain better. I too think of this forum as my family and hope for many more discussions.

Love to all,
JoeJoe
Hiv+ since 1991, AIDS since 2001

Offline AndyArrow

  • Member
  • Posts: 1,196
Re: Some negative people just don't get it!!! Tired of explaining myself?
« Reply #6 on: January 06, 2010, 02:21:21 AM »
I know a big factor with my family is they all saw me through my latest bout with esophagus in 07 when I was down to 79lbs.   Now, they see me back at my normal weight (ok a tad over)  >:(  and they think all is fine and dandy.   "Oh, you look so good!"  -- So often you just want to say Yes, but I feel like crap and am tired all the time.  I mean it's a struggle to get out of bed ... and then I've become very fond of an afternoon nap.  Getting my testosterone checked to see if that's a factor.  :(

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

Offline AlanBama

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  • Posts: 3,641
  • Alabama: the 'other' 3rd World Country!
Re: Some negative people just don't get it!!! Tired of explaining myself?
« Reply #7 on: January 10, 2010, 03:18:57 PM »
I also get tired of trying to 'explain' it, and don't bother to very much anymore.   It isn't worth it.

It does get old, trying to 'pretend' and act as if nothing is the matter with you.....it's your own fault because you feel so weak or tired....you just don't get enough exercise....I've heard them all.

As you say, 20+ years of meds, probably a couple of dump trucks full of pills, has taken a toll on me.

Hugs,
Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline weasel

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  • Posts: 1,686
Re: Some negative people just don't get it!!! Tired of explaining myself?
« Reply #8 on: January 10, 2010, 04:09:59 PM »
  What a topic  :o

    MY  family is very supportive  although they suffer  from " YOUR OK syndrum " As far as I  go  ::)

    My in-laws ,  all  women  and all WORK  in nursing jobs ARE   morons  ???

    I get tired of hearing  " YOU ARE FINE " , " DO WE HAVE TO HEAR YOUR REASONS "  ::)

    They are all fat and lazy and relate their horrid lives to being cursed with bad bones ,

    What are bad bones  ::)   Lazy is as lazy does .................


  oh , I got off topic  :)

    Yes I agree  the Public does NOT quite get IT !

    When I tell people that I have to cancel cause I AM tired , they ask why ?

                               I hope it all gets better , doubt it  :P

                                               Be well , Carl

   
" Live and let Live "

 


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