Can we talk about treatment side effects without throwing it under the bus?

[risred1]

In my slamming treatments thread, I complained about overt negatively towards treatment that actually can increase anxiety and potentially delay going on meds at the desired, sooner than later target.

The question is, can one talk about ones problems without expressing them as something that everyone is going to aquire?

I expect that is a hard thing to do.

The statement I am making is that there should be a way to express frustrations and concerns and comment without throwing treatment under the bus. The recent posting of Stop the meds! comes to mind. Under the guise of just stating an opinion, came a derisive attack on meds for the whole community, stated as fact not opinion and making recommendations that may be right for that individual or reflect what that individual is going through. But in the end is just a way to validate ones opinion by "recruiting" other to a radical stand on treatment.

Of course that is "one right", in the world of internet commentary, if uttered in the acceptable language that moderators surmise as "civil".

I would just remind that these forums are important to people. That people actually make serious decisions based upon information presented in these forums. The quality of the information is generally very helpful and thought provoking. Therefore it has influence on others.

The flip side is that being who we are and the fact we are not all writing essays, that maybe that is too high a bar to aspire to. Fair enough. That's why we can comment on statements being made in an effort to argue the other side.

Happy commenting!

[allopathicholistic]

I use the Report to Moderator button. The way I see it, posters who are deadset against treatment are few and far between. I hope I got your point 

[antibody]

i am glad people talk frankly about the side effects they have or had. for me it let me know what to expect and when the i experienced the same side effects i was reading in these posts i knew it was time to change drugs. so i would rather know what to really expect than to have it candy coated.

[risred1]

To further qualify my point, its not the individual experience I'm commenting on.

It is the broad based conclusions that ones experience is going to be everyones experience. Essentially, treatment sucks for me and it WILL for you, in the grossest sense.

I just observed a couple of threads where experience was being projected on everyone else. Because the ones who do well often do not comment or defend treatment, we can be left with the impression that it all sucks. When in reality it may or may not suck, and there are options.

Even the one fellow who stated, "expect the worse!", is doing better after making some adjustments. His experience was pretty terrible, but its not now. "Expect the worst!" as a comment is a forthright exclamation of frustration which I can understand, but expecting the worst really isn't the right mindset, if I were to be so bold, that should be projected to those on pre med status.

Another thread states, "absolutely do not do Sustiva".  That is just plain ridiculous to make that projection on what is now the defacto front line treatment component. Sustiva has funny stuff about it, and there are some who can't tolerate it, just like there are others that can't tolerate other HIV meds. We live in the era of options, so I encouraging a more open minded approach to treatment, if its not working for you, try something else, don't worry about it so much. Its better than dealing with the Side Effects of HIV.

I as well want the facts and the knowledge, I just want to point out that some conclusions that are being drawn are incorrect and a bit overbearing. And now I'm being overbearing in trying to make this point.

Sorry!

[Tempeboy]

Well said,

Mostly treatments are good, and they are definately getting better.  Keeping a constant eye on the research horizon, it looks like the next 5 years are gonna revolutionise HIV treatment.  Too much bad info makes it nightmarish for those planning to start.  I suppose we tend to hear the bad before we hear the good - maybe thats just the nature of the beast.

Even though your bloods are good, maybe when you do start you could start a discussion asking only for happy news.

Take it easy

xx

[fondeveau]

I'm one of my doctor's favorite patients now.  The reason: I'm boring.  No side effects.  No treatment issues.  No hysterics.

I guess these are the same reasons my friend wants to send me to gay rehab.  We went to a bar and he said all kinds of men were giving me the eye and I totally failed to register anything on my gaydar.

I suppose its natural to be more vitriolic in denunciation of negative experiences and wax euphorically about the positive things in life.  But, no one needs to say much where things are as expected and routine.

[jack]

la de dah.  Many use these forums to vent because they have no where else to do it and they know others here empathize.  Most here understand that the drugs are different for everyone.   Todays treatments do not appear as toxic as those in the early days and that is nice. As someone who has suffered through severe sides on many drugs, I empathize with those who feel there is no hope, because I have been there, and I do feel guilty now that I am finally on a regimen that works and has few sides and I ignore those who still suffer.  I have never been sick from HIV, I have been hospitalized because of the drugs, my body and face have been deformed, I considered suicide while on the drugs, I lost a fortune because I was so sick from the drugs, and I sit here today after 20 years on drugs with the first regimen that works and doesnt make me sick and at times I forget the horror of the mid early and mid 90s and that makes me wonder about myself. I am a very positive person and ready to move on but I know many still suffer and they need to vent.
You have to excuse those who hate the drugs,the pain is at times unbearable and there is no one who really understands. The doctors think you are full of shit and accuse you of not taking the drugs, or of imagining the nausea,pain,and diarrhea. Please understand these people who are complaining have no where else to go and no one to listen to them.

[megasept]

Actually "Expect the worst" and "You'll see, you'll do great" are neither wrong nor right messages, unless we know the actual person one is addressing. Lots of folks vent here if we mean express negative emotions. Lot's of negative information here is presented factually...and it can be awfully scary if you really pay attention. People have every right to these discussions, and I want to read the negative about a treatment BEFORE I choose it and BEFORE I start it. If someone can't handle that then they probably aren't full adults yet. We are all hear to discuss the many facets of a common disease, not what to do with a pot-o-gold. I am not too interested in people's feelings expressed, than in the facts and the theories they posit in some very thoughtful postings. I am not suggesting we vent, nor use immature or exhibitionist styles. I don't. But I can filter out what I don't need.

I don't like anything candy-coated. Before I take a new prescription from my MD I ask "what's the worst thing that can happen to me with this drug." Then if I accept her answer, I fill the prescription and adhere to the dosing schedule. My personality does not put me in the majority. The problem is most people just drop in here, most are new to hiv or still negative, and may indeed be depressed by our dire postings on side effects. There is no "one size fits all" style, though civility combined with a touch of gallows humor fits me perfectly.

I am not clear what you meant by your "sooner not later" comment regarding starting treatment. Does "sooner" mean right away? If you did mean that, I strongly disagree. That's probably not much better than the poster who angers you by stating "Everyone should stay off _______ [fill in the blank]", etc. Poz should start the best treatment available to them at a time when the negatives of non-treatment outweigh the negatives of treatment or I could write when the positives of treatment outweigh the negatives of side effects. Same difference. I'll take toxic drugs when the alternative is worse. Gladly, as a matter of fact. But I am not going to do a dance to honor a drug cabinet full of pharma either, OK?  "One size fits all" never did anyone much good.

   -megasept

[risred1]

Fair enough.

I did state to a person "sooner than later", delivered in the context of based upon current standards for medical treatment. Although I am not a qualified medical professional, as most of us here are not, I am fully aware of the implications of a VL of 100,000. I did say, time to have a serious discussion with your doctor as well.

I also offered a possible reason why the VL was peaking with a relatively high CD4 count, which is, in my opinion, something worth looking at.

So in trying to help, i gave some additional advice in a good string of comments. My message was not of woe, but of the next step to consider. There is a difference between overstating the horrors of the next step and the rational understanding of what lay ahead.

I am not arguing against venting. I have to make that clear. We do need a place to vent our frustrations. I am not discouraging commentary in this regard.

If a person is having a problem, please ask and i know as a group we will do our best to help.

If a person has questions regarding what lay ahead, again please share your experiences, experiences of friends, your understanding of what the deal is.

I am suggesting a one to one view of commentary. When we go one to many, which means, projecting ones experiences as representative of all, pronouncing as if the truth of the individual experience as the inevitable conclusion for the entire HIV experience, well, I have a problem with that. And that is what this is about.

In addition, The idea that only immature adults don't get what a forum is about and should be able to shrug off the nasty stuff is just callous. The one size fits all and tough on you if you take the advice and posts here seriously. I mean, don't you understand that this is a site where people come to help deal with HIV. Don't you think, especially in the questions about treatment and side effects section, people are taking this stuff to heart and seriously?

When you go to the well of knowledge, and who better than people dealing with this stuff, are you going to get the honest information? This is not inconsistent with my desire to not slam treatment as a whole. One on One discussion is the only point I'm trying to make. Venting ones own frustrations to someone asking a question is helping who? and how? Venting ones frustrations as topics and then blasting all aspects of a class of treatment is doing what to whom?

Once again Consider the statements. And I'm sorry if focusing on these statements I am drawing attention to those who made them, because I know they are having a hard time.

Expect the Worse.

Absolutely do not do Sustiva.

Stop the meds.

I'm just reacting to these statements by raising these topics. I'm not going on some Freedom means responsibility bent, or rose colored view of the world that treatment is a wonderful thing all the time for everyone. We do know life is unfair after all. And some of our bodies are better than others, which means some of us are worse than others. And I'm not the essay police or a monitor and would not want to be.

I'm stating that people take these forums seriously. People take the advice to heart. People are influenced by commentary here. I'm suggesting that we try to keep that in mind.

I am also trying to get those who are doing well to also share, because if we want the whole story good and bad, maybe we need to hear the good to. Cause some of the posts have been trending to the overtly negative.

I can understand if those who are doing well, such the the guy who is the most boring patient, may actually feel a bit guilty they don't have serious problems or issues. Please Please Please, you can tell your story too. If we can "take it" as a community, maybe we can handle those that are doing well on treatment as well as just the bad.

Overall, the responses got me thinking more about these issues. This is not a medical community responding to questions as in thebody.com, of which I receive the weekly newsletters. If that were enough, I would be posting and reading questions here. Perhaps I was thinking along the lines of we as the experienced would dole out the best advice to be had, the one from the patients themselves. But there is much more going on here, so I do concede that we are not a medical community answering questions in a "professional" manner, nor should we be. I am not a doctor wannabe. I'm more of a psychologist wanna be. I'm interested in people, what they are thinking of, and mostly, what are we afraid of. Fear of treatment in the HIV community has legs of its own based upon a long track record of problems. I just like everyone else, am concerned about the toxicity of the treatment, but don't want fear to prevent me from reaching for that solution, when the time is best for me. In dealing with my own fears, I am cognizant of others who have the some concerns.

If I can help someone make the decision to do something out of knowledge instead of fear, I would hope that is the right place to be. Am I projecting this value of mine on others? Well, as so many here have put it in their posts, we reflect who we are to each other.

 

[megasept]

Fair enough.

I did state to a person "sooner than later", delivered in the context of based upon current standards for medical treatment.I am suggesting a one to one view of commentary. When we go one to many, which means, projecting ones experiences as representative of all, pronouncing as if the truth of the individual experience as the inevitable conclusion for the entire HIV experience, well, I have a problem with that. And that is what this is about.

In addition, The idea that only immature adults don't get what a forum is about and should be able to shrug off the nasty stuff is just callous. The one size fits all and tough on you if you take the advice and posts here seriously. I mean, don't you understand that this is a site where people come to help deal with HIV. Don't you think, especially in the questions about treatment and side effects section, people are taking this stuff to heart and seriously?

I'm stating that people take these forums seriously. People take the advice to heart. People are influenced by commentary here. I'm suggesting that we try to keep that in mind.

I am also trying to get those who are doing well to also share, because if we want the whole story good and bad, maybe we need to hear the good to. Cause some of the posts have been trending to the overtly negative.

If I can help someone make the decision to do something out of knowledge instead of fear, I would hope that is the right place to be. Am I projecting this value of mine on others? Well, as so many here have put it in their posts, we reflect who we are to each other.

[NOTE: I HAVE DELETED A MAJORITY OF THE POST ABOVE...THESE ARE SECTIONS PERHAPS MOST RELEVANT TO MY RESPONSE.]

Like you, I want to "hear the whole story good and bad", which means there's lots of room for...constructive negativity. There's plenty of fatalism here, only it goes largely unanswered because it's the positive variety. Like the song goes (Real Compared to What?), "I can't use it." But others can. 

Read again what I actually wrote today. Maybe you are "projecting" a little in your response to mine. All my previous Posts are available to you. Callous? I didn't suggest anyone be callous. I have never excused nastiness here, but I did excuse emotionalism today. In fact, I might even be excusing the kind of venting you're doing right now.

Irresponsible or uninformed objections to treatment do hit a never with me---not just you! FYI: I have very strong views on Denialism, because I am old enough to remember when it's influence killed some of my infected peers (I checked out Duesburg in the mid-80s too), and I am informed enough to know HIV Government-led Denialism is the number one (not a typo)HIV problem in Southern Africa today. So I have perspective.  It's a global disease, and I've hosted it a fairly long time.

If someone is medically full of @^#*, then try to answer him/her medically, with your eye on the average reader (the one you think I ignore). If someone seems adversely affected by someone's Post, why not PM them for a private chat? Lower the volume. Say a little less, or maybe post less often. And yeah, consider your audience---it's a hodge podge. So how am I callous? Or is that the bait? You could have always PM'd me.

Personally, I advocate critical thinking over the emotionalism I defended today! I am not advocating what I don't do here. I am defending people venting if they feel like it. I am not advocating ignorance or illogic. I am advocating a light touch when it comes to protecting people from such views. I think when people see a debate here (there are many), they don't need someone to remind them there is more than one viewpoint. There is no Group Think and there is no treatment "Good Housekeeping Seal of Approval" here. And yes, there is advocacy and great unbiased information on this Site. That's about the right balance. There are lots of good people here, and I don't just mean people with beliefs closest to my own. That's not my criteria for community. Tolerance demands we all develop thick skin, not that we be callous towards one another.

   -megasept

[risred1]

I should have qualified better, the callous remark was for a prior post, Jack's. I was taking too much on in a single post and rambled a bit.

I am not looking to be protected, and I am fine with with almost anything and understand that there is nothing here to edit us or a standard that we have to adhere to.

I'm just looking at what is happening and commenting on it. Essentially editorializing.

I think we forget or don't realize that the treatment and side effects forum is overall a pretty serious section on the poz forum where often people with real problems ask questions and/or post comments. Anyone who is visiting that section is looking for information about the meds. I'm sharing not just what was my outlook on treatment, but what others probably feel as well. If all you see is just the bad side, well, what conclusions should one draw?

I know now its not all bad news. I will not delay my treatment when it becomes time. My ultimate wish is that other can do so balancing the potential trade off in benefits vs. side effects.

[Miss Philicia]

But risred, as you can see from the posts in this thread and the other thread on this very same topic (I'm still not sure why you started two threads frankly but whatever) the bottom line is that this "balancing" that you advocate is entirely subjective.  At any rate, the few particular threads you're having problems with would, if some standard was set and agreed upon on AIDSmeds with this issue, have to be enforced by the moderators.  I think you really need to bring them in on this if remains a big issue for you.

[risred1]

Well perhaps my objectives are futile.

But I can try to raise awareness before resorting to escalations.

Besides, I'm watching everything! And ready to use the mighty pen to set things right!

 

[Miss Philicia]

[antibody]

Well perhaps my objectives are futile.

But I can try to raise awareness before resorting to escalations.

Besides, I'm watching everything! And ready to use the mighty pen to set things right!

 

it is not futile, if you want to become an advocate and help others. speak about the good treatment can do and if issues are raised help them solve it. I am taking part in a research study at UCSD on what meds effects have on the body and brain. I like to think I am doing this in order to help others with HIV understand it's treatment. I understand you haven't been on meds yet and that's wonderful. but to be able to speak about Sustiva one should experience Sustiva. I took it for 9 months. I can tell others about my experience. I haven't used Crixivan so i can not and would not tell about it's side effects. hope i make sense. i mean no offense to you for being treatment naive. it is great you are healthy to not need it. but i look to those with more experience for advice. i know the answer are not always good or what i want to hear but i have enough faith in those that post they speak the truth. (ps...No i don't believe everything i read)

[NECMHGUY]

I am glad someone said something about the overwhelming negativity I read on these boards.  My doctor referred me to this site when I was diagnosed nearly two years ago, and he framed it as a place to find "hope" and "support".  After visiting the first couple of times, the posts frightened me so much that I never wanted to come back here.  I want to know what to expect as far as side effects are concerned, but let's do each other a favor and talk about the bad AND the good.  I don't have anywhere else to go but here.

[milker]

I think I have seen lots of posts saying that people had no side effect or very slight side effects. But when someone posts something saying that it's great they're on meds and there is no side effect, the only responses can be congratulations. When people are experiencing bad side effects the replies are longer and last longer, so you will see the more often.

Milker.