I'm afraid again

[tommyga]

I'm starting to feel like I really shouldn't be reading information online. I looked at a few blogs on gay.com today, and it was just full of jerks really giving grief to people for being irresponsible and contracting the disease in the first place. Then several people went on to talk about the horor stories they've experienced, or their friends have expereinced.

I'm kind of back in the same place I was initially, in thinking that I don't have much of a future. I really try hard to keep my head up, and think about advances in medicine, etc. But then they have rants on the harmful effects of the medicine.

I'm not sure what type of response I'm looking for, maybe a little reassurance. I don't know. I'm a little pissed and sad at the same time.

Maybe I'm just stressed and it's affecting me more than it usually would, but after reading all of the info there, I feel a bit deflated.

[Joe K]

Hey Tommy,

If you allow others to influence your views, then you will never find peace. What others experience or their opinion, has absolutely no bearing on you or your experience with HIV. While the Internet is great for sharing information, a lot of the stuff is just ignorant people, spouting off, about things they know little about. As I read your post, I think some of your frustration concerns the topics that you mention and how they effect you personally.

Take the people giving others grief about becoming infected, might that reflect some of your own feelings, about becoming poz? I found that I could not more past my guilt, at becoming infected, until I could forgive myself for the role I played in becoming poz. At some point, you will accept that you made mistakes and that nothing good comes from beating yourself up over it. I mention this because I think it plays on our own self image and that may be why you become so upset over people mentioning bad experiences with HIV. You may even feel that somehow you deserve to be punished, for becoming poz.

What truly matters is how you see yourself and your infection. My experience with HIV, has nothing to do with yours, but all pozzies share common threads. I suggest you concentrate on living your life and working on any issues that are important to you. Try to become your own best friend and learn to trust your gut instincts. Believe that the choices you make, are the right ones and try and enter new situations, with no expectations what so ever. If you start drugs, you need to believe they will work and assume you will have NO side effects. The mind can be very powerful, so don't assume that something bad will happen, rather assume that only beneficial results will follow.

Learn to trust your body and remember that all the tests and numbers, are just one indicator of your health and how you feel. You really are in control of your life and I urge you to reject concepts that do not fit your situation. I don't know how long you have been poz, but I'd guess not very long. If so, just give it some time. Stop reading the horror stories and go out and do something you love. Believe me, when I tell you that you will live a very long life and only you can decide on what kind of life you will live. Tommy, you can adjust to being poz and someday, being poz, will just be another facet of your life. You can and will do this and I should know. I've been doing it for 25 years.

[RedBear]

Hey Tommy,
   I agree with Joe, don't let anyone drag you down over being HIV.  What's happened has happened.  All you can do is work on getting yourself to a positive place and keep your health up.  You definitely have a future, so plan accordingly.  Life is a wonderful thing and we often take it for granted, so live each day to the fullest.  Give yourself the right to have hopes and dreams and have some fun. 
    After I had PCP, I really thought I was only a few months from death.  But with the meds and the support of friends and the forums, I feel that all is well.  I'll admit that I was fearful that meds were toxic and heard the horror stories as well.  Fortunately I've had little side effects from the meds.  Those disappear within a month or so and you're off to better health. 
    Don't listen to others and experience HIV in your own way, everyone is different.  I know you said you needed a little encouragement, well I certainly support you as do many others on here.  Hang in there. 
      David

[tommyga]

You guys are great. Thanks so much for the words of encouragement. I really appreciate it. Sometimes I think I just need a friendly word or two to cheer me up. Happy holidays to you both Joe and David, and thanks again for making my day better.

You are both right, and I'm new to all this, so I'm in a bit of an up and down pattern with being ok, and then hitting tough spots.

Much love to everyone,

~T

[Nestor]

Hi Tommy,

About a year ago I spent a bit of time reading the articles (bad) and comments (worse) on gay.com, so I can completely relate.  I never saw a a more disagreeable group of people.  First, there was a series of "debates" about monogamy vs. open relationships.  About 90% of the men writing comments supported monogamy and were against open relationships.  I admire and respect monogamy enormously, but it wasn't enough for them to take the stand they took: they went to outrageous, comical lengths to outdo each other in saying how disgusting, how filthy, how vile, how deserving of being exterminated (really!) the men were who had a different view and wanted or had an open relationship.  

You can imagine how this crowd then talked about HIV when the discussion turned to that topic.  There was one character who, each time the subject came up, adorned the comment box with the same invariable one-liner: "Responsible people do not get HIV".  At least he had the virtue of brevity; others wrote long diatribes to make essentially the same point: that those of us who had HIV were irresponsible, dangerous, deserved what we got, and were probably out to infect everyone else.  One person actually said something along the lines of "the health of the tribe is more important than that of the individual.  When an animal is diseased it is kicked out of the herd and left to die alone.  We should do the same".

 I wrote a couple of comments in which I tried to respond to these statements.  The jist of what I wrote was: "Even if we grant that having unsafe sex was irresponsible, that does not mean that the person who got HIV through unsafe sex is an irresponsible person.  It means he did an irresponsible thing once in his life.  A generous person is not expected to be generous on all occasions; a smart person is allowed once in a while to say something that's not so bright.  In the same way, there are lots of very responsible people who, however, had an occasion, or even a period, when, being depressed, or careless, or listening to the pressure of someone they were in love with or attracted to, did an 'irresponsible' thing.  The hard fact is that they--we--must spend the rest of our lives with a result which, unlike the results of most of our mistakes, cannot be undone.  And so?  Even if I am irresponsible, I would rather be irresponsible than be dishonest.  I would rather be irresponsible than be stupid.  And I would rather be irresponsible than be a meanspirited, bigoted person, flinging hurtful insults about in an internet forum, such as some of the people to whom I was responding."  I don't think I got much of a reply; apparently it's much easier, on the mental level of those people, to restrict oneself to the incendiary sound-bite.  

What I quickly figured out was that the comment boxes of gay.com are a sort of haven for frustrated and anti-social people.  The articles themselves are generally trivial and the ones on HIV are irritatingly melodramatic.  I haven't even looked at them for about a year, so I have no idea whether what I am saying is still true (although with what you say about their being "full of jerks" it sounds as if it hasn't changed much) so my advice to anyone, with or without HIV, would be to give gay.com a pass.  It sure didn't brighten up the few weeks of my life that I spent following it.  

However, knowing truth is generally a good thing.  The truths that come out of reading the comments on gay.com are, first, that a number of our fellow gay men have all the ignorance and mean-spiritedness of much of the rest of the human race and, second--and for me more difficult to tolerate--seem to lack the most rudimentary awareness of grammar and punctuation.  After all, why should I care about the opinions of a cretin who doesn't know what an apostrophe is for?  

So, it seems that after a year I too am still 'pissed off' at some of those jerks on gay.com.  But who cares?  That the world contains unpleasant people should be neither new nor surprising. Fortunately there are better people too, and hopefully some of them are our friends.  

As for the future, and what medicines and the virus will do over the long term, I don't think there is a single person here who is exempt from anxiety as to that. But there are no grounds for saying that we don't have much of a future.  There are too many people who have had HIV for decades and are not only still here but are leading productive and interesting lives, for us--who will in all likelihood never have to go through much of what they had to go through--to say of ourselves that we have no future.  I intend to have a future.  I already have had a future--the past four years, which have included many good things I could not have imagined when I first found out I had HIV.  I don't know what the long-term future holds, but neither does anyone else, including people whose problems happen to take other forms than this virus.  I am operating on the assumption that I have a full life (or second half of a life) before me, and I don't engage much in the unhealthy habit of fear.  

Good luck, and stay away from gay.com!

[max123]

tommy,

glad that you're feeling a little better about things.

as a newb myself, i realized that learning to deal and live with the whole hiv thing can be overwhelming, 4sure. for me, an effective means of dealing has been prioritizing and addressing the matters at hand one at a time, to not get consumed in the process.

one of the other things that i've made a priority is further developing my 'skin'. as with many gay men, i've learned to thicken mine, so to speak. there's always going to be an ass out there spewing nonsense out of their hole.. it's really not worth it to take it so to heart. the way i see things, karma can be a real bitch when he/she wants to be. so in the end, why should any of us care? try focusing your attention on the good things in your life and set up boundaries for yourself which you will let no foolish words pass through. remember...this is about survival, feeling good & feeling good about yourself...just like life was before the hiv bomb hit. think about it....

take care.

max

[MarkB]

Hi Tommyga

I think most of us can identify with the feelings of anger, sadness and fear you spoke about. Those feelings will come back, from time to time. Like you, I have been "afraid again" so many times. What I now also know is that I need never be afraid again alone, and neither do you.

There are other voices out there than those hateful, fearful ones you find in the blogs you read on gay.com today: wise voices. These are the ones to listen to. Don't follow your fears - stay where the facts, the wisdom and the experience are; stick with places like this website.

 

[jm1953]

Tommy,

Just wanted you to know you have a lot of support on this forum.  People really care about one another and are willing to share stories, knowledge, or just lend support.

Hang in there.  Things will get better.

All my best,

Jeff

[tednlou2]

I started watching medical videos on youtube about HIV.  I noticed in the comments section that just about every comment was negative.  They were full of HIV deniers, HIV is a gov't conspiracy, and we deserved what we got.  I'm serious-- just about every post.  I guess youtube doesn't screen comments.

I feel like I'm going to sound like a broken record to some, but I found out one year ago after getting strep-pneumonia.  My CD4 while sick was 171 and I was told I had AIDS.  Fortunately, my CD4 rebounded.  I had severe depression and panic attacks.  I thought my life was over.  I was scared to go on trips away from home--still am.  Things have gotten better over this year.  I'm learning to deal with it.  I actually think getting the pneumonia was a blessing.  I found out I was poz before my immune system was shot.  I doubt I would have gotten tested until it was very late.  I quit smoking and I'm now monitoring my health--cholesterol and stuff like that.   

Having said that, I still ask why me.  I have friends who are with a different guy every night and keep testing negative.  I actually started wishing HIV on them.  That is so horrible to say.  I came to my senses.  I don't wish HIV on them anymore.  I now beg my friends to be safe.  I even put condoms in their coats.  If I get a running nose, I still worry.  I'm suppose to go to Florida for Christmas and I worry about being so far from home.  I worry something bad will happen to me.  I know that is an irrational thought.

I guess what I'm saying is that I've come a long way in one year.  However, I still worry and get depressed.  As others said, we can't change that we are poz.  You need to be thankful you found out early.  I believe I'm right about this--most don't find out they are poz until CD-4 is below 200 and they get PCP or another OI.     

[Moffie65]

I just wanted to check in and comment on this thread. 

It is vitally important for those of you who are new to this virus, to understand it, and to come to a place of acceptance of YOUR virus.  Call me nuts, insane or anything else you would like, your virus is yours for life, and up to now, there is no hope of you ever getting rid of it for life.  Accepting that fact, and embracing the virus that is now yours, is tantamount to becoming whole again and living a full and productive life. 

Those who know me here also know I made a pact to live fully and happily for the rest of the life I might be given.  This led me to work for another five years at my employer, Eastman Kodak, and then quit and purchase a Kenworth and hit the road.  Why?  Because it had been a life long dream of mine to hit the road and see the country from an altitude of 10 feet off the ground.  Driving professionally was fun, good and made me a living salary, however all was not peaches and cream.  I lost a fortune, had to sell the truck, and move on with other dreams, while that one was checked off my list.  No I didn’t make any money, but learned an equivalent of twice what I lost; in knowledge that has helped me with a couple of successful businesses since 1988.

Becoming overwhelmed with HIV is not unusual, or uncommon, but learning your way out of being overwhelmed certainly is.  For those of you seeking knowledge, I suggest that this site in the lessons area, is so comprehensive that you likely would not need any other websites to go to, to come to an understanding and working knowledge of this disease.  However, I must caution, knowledge without action on your part is perfectly useless.  If you learn that your immune system is damaged, and then proceed to party hard, stay up all hours of the night, drink far too much alcohol, take far too many recreational drugs, or anything else that will be detrimental to your overall health; means that you really are not serious about living a full and wholesome life.   I am not suggesting you take up the cloth and dedicate yourself to a Holy existence, but to simply walk into the future with knowledge that you can and should act on to make sure your body stays healthy and happy.

The sooner you all take these steps, the sooner you can look forward to a healthy and long life.  Take steps today to make this happen, or you will simply prolong a very unhappy and uncertain present.  After all, worrying about the future is a total waste of time.  All you have is today, this minute, this second to make changes and refocus your minds and hearts on living fully in the moment. 

Yesterday is history, tomorrow is a dream, and today is all we have!!!


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[Sebastian1969]

Tommy,
I hope I say this right...but here goes.
For the most part Gay.com and sites like that are for one thing--to find someone to have sex with.  The comments you read on there ranting and raving about HIV people being irresponsible are comments from ignorant people who are pissed that they feel they have to have safe sex with people they hook up with on there.  Do not take it to heart.  I am a negative partner of a possitive man, and I have yet to read, meet, talk to or even hear about anyone who got HIV because they "wanted to".
Sex, making love, shaggin, whatever you want to call it is a wonderful thing, it is sad that there are so many things (HIV, other diseases, unwanted pregnancies) that can come about from a few moments (or hours-depending on who you are) of pleasure.
Know that not everyone feels that way about people with HIV, a lot of people I know did 20-30 years ago, but today realize they were stupid for thinking that way. 
Anyone who has ever had unprotected sex put themselves at risk, don't take what they say to heart.
Only you know who you are, and your comments do not strike me to come from an irresponsible person, or anything close, so ignore the idiots online and concentrate on the good people you come accross.

[max123]

well said, moffie

[GSOgymrat]

I started watching medical videos on youtube about HIV.  I noticed in the comments section that just about every comment was negative.  They were full of HIV deniers, HIV is a gov't conspiracy, and we deserved what we got.  I'm serious-- just about every post.  I guess youtube doesn't screen comments.
  

You have to develop a thick skin if you are going to read YouTube comments because a lot of the stuff on there is either ridiculous, offensive or both. Take almost any topic and someone will be contrary and go on a rant. Actually surfing the internet at all can make you depressed. Today's WTF topic for me was learning of the protest against the movie Avatar by gays and lesbians, not because there was anything offensive to gays in the movie, but because they didn't include gay blue aliens and the lovestory was heterosexual. Apparently these people are more concerned about fictional gays than the real ones that are being murdered by the government of Uganda. http://stopavatarmovie.blogspot.com/2009/12/december-18-2009-international-day-of.html

See, even on AIDSmeds you can't escape some yahoo going on a rant!

[CapeCodder]

Hi Tommy,

Gay.Com is losing membership and its once powerful web presence because of idiots like those that post garbage. You are going to find hate mongers everywhere you go all throughout your long life!

As far as reassurance, it seems that you already have multiple people here that care about you, through their replies to your post and that in itself should be reassuring.

I don't know what part of GA you live in, at least I'm assuming you live there from your screen name, however if you are in the greater Atlanta area or even near Savannah, there should be some nice social groups that you might look into. These are people in the same boat as we are and those that will relate to what anxiety you have and how to control it or deal with it. You may make some really great friends or more, as well.

Never take anything to heart that involves a person or people bashing any one group, be in virtually or IRL. I've found that these people in general, are very discontent with their own lives and need someone or a group to use as a punching bag to make their own meager existence worthwhile.

You will do well in life as long as you remember that you are the only person that can empower yourself through creativity, love, caring and never lowering yourself to the level that others may try to drag you to.

[tommyga]

I just want to say thank you again to all of you for responding. You guys really make me feel better, and I truly enjoyed reading your responses, and feeling a sense of community here.

Much love to everyone in this holiday season, and I wish you all a Happy New Year!

[David_CA]

Tommy,

I don't have much to add to what others, especially Joe and Tim, have said.  I'm nowhere close to having lived with this virus for a long time (diagnosed in '06), but I did go through what you're describing early on.  I felt stupid for having 'let' myself become infected.  I felt ashamed and that there would not be much positive in my future.  I was angry at myself.  I also went through a very short period of depression.  I was on antidepressants for a short while and saw a shrink... both helped a lot.  After 8 days in the hospital 3 years ago with PCP (pneumonia) and disclosing to my family, things are much better.  In time, you'll most likely come to accept the fact that you're HIV+, will be for the rest of your life (most likely), and will go on.  Sure, some things will be different... Dr. appointments, meds, having to be concerned about health issues.  For many of us, HIV is the first health problem we've had to deal with.  I won't say that being HIV+ today means nothing at all, but, for me, life is good.

As to how those guys on gay.com make you feel... screw 'em.  I'll bet that few, if any, of them know squat about HIV or what it's like living with it.  I always think it's a bit ironic that a minority (gay men) could consciously post what's been mentioned here about another minority (gay HIV+ men).  Also, I went on gay.com to see some of these comments and couldn't find them.  I suppose I have to be a member.  We've moved on from gay.com years ago and mostly use manhunt now.  I've never felt any discrimination at all from guys there.  Sure, some might not consider me for a sex partner, which is fine, but most just had questions about it - how long I'd been HIV+, how were the meds, how was my health, and general questions on infection and transmission. 

David