Speak Out : A Change In Attitude
(From Positivelite)
Life with HIV, I am learning, is a lesson in understanding the struggles that others are facing. Why? Because, I know that other people can be struggling on the inside or have issues that have no “public face.” Yes – I have HIV. But unless I’ve told you, you cannot tell by looking at me (or any HIV-positive person).
I think for a long time, people around me who don’t know about my status have sensed that something is off. Indeed, my best friend told me that one of the things she found hard is when our friends would ask her about me – not to be nosy, but out of genuine concern – and she had to cover for me, saying “oh, he’s just going through some stuff.” I feel a bit of guilt for making her do that, and it brings up the feeling of hiding that I’ve discussed before.
It became stark that I had perhaps been off for some time when I was at work yesterday. Of course, anybody is going to be a little more perky when it’s Friday, but I did something that made a co-worker laugh. When our manager overheard, she said (somewhat jokingly): “What has you in such a good mood lately?”
I know there was no ill-intent behind the question, but it made me wonder… Have I really been that off for almost a year now, that I’m seen as the grumpy, disagreeable person in the office? Did I make a mistake by not taking time off work after my diagnosis? It was such an innocuous question, but it really made me wonder if I had damaged my reputation by letting my diagnosis gnaw on me and going to work while pretending everything was okay.
But I thought a bit more about things, and I realized that now that my health has stabilized, I feel like my old self again. I don’t have the fear of not knowing any more. My treatment is working, I am not constantly wondering about “what if”, and I’ve set firm boundaries with Alex. I’m feeling like what I always was and have been – me.
Chronic illness of any kind does not define a person – and that is something I learned just on my own. Since I started blogging, I have connected with other people’s journey – like Cass’ – and it again highlights what I’ve already said: so many people are struggling, and few people know about it. My illness doesn’t define me. It doesn’t slow me down. It doesn’t make me “damaged” or “different.” And realizing that has given me a different outlook and approach to life.
Josh
Well your definitely heading into the right direction, being poz myself for 17 years, I’ve had my share of Ups and downs with this diagnosis, everything from disclosure, to regimen changes to dealing with serosorting on the online dating scene, (you know the DDF UB2 stuff), to the bareback conundrum, we all go through that initial depression after the initial diagnosis, the guilt, the what if, and/or why me,but for most of us luckily come to a place of peace and balance and learn to live in harmony with ourselves.
There are several factors that’d drive poz men toward being a “little off,” some physiological in the long term, but, and probably most prevalent, psychological. First off, as many on here know already, I’m neg, I survived the Holocaust intact, and did it through altering my lifestyle from “bi-leaning-gay” to “dormant bi/mostly str8” until relatively lately. There was a big psychological toll I paid for that decision as well, but, in the end, it’s a decision I believe was/is the best for me. Übergay males don’t have that option, other than complete asexuality, which, although 100% effective in evading HIV (and HCV, and HPV, and clap, and chlamydia, etc. etc. ad nauseum) probably exacts an even more daunting toll on one’s psyche than with what I had to deal. Übergay men these days are facing what I faced in 1981, but are armed with recourses that can prolong life, as well as provide scientifically verified statistics, so that they know their risk factors. Still, it’s something that’s an onerous burden BEFORE you poz up, one of which only get worse when you DO poz up. Self-doubt, self-loathing, the burden of “carrying a secret” all take their toll. Most, sadly these days, just bury the whole issue, say “fuck it” and go on like there WAS no infection, many using T and other dope to bury it with more permanence. It seems to me that you have a conscience, and therefore, felt negativity about your status for all the aforementioned reasons and more. However, with time, self-examination and counseling, it can be manageable to the point where life IS good, and you’re proof of that. The poz men I know who speak honestly and openly about their status do have this to say…that they DO feel “different,” and that they’ll never be “the same they were” again. Unfortunately, that’s a true statement…the HIV bug is the smartest retrovirus out there, and, despite borderline criminal ad campaigns by pill slingers like Gilead, there IS no cure or vaccine anywhere on the horizon at the time, and PReP is essentially a money-making scam (51% effective alone…who CARES?). Hell, we had to wait until AZT in the very late ’80s before people quit dying! Your inner strength is what’s doing this for you, and the realization that life IS now possible living with the bug. I chose not to even try it, and have suffered; you’ve suffered much more by getting it, but now have hope for a good life. Many who I knew and loved and were friends with didn’t have that chance and were basically condemned to an eventual death sentence…over 200 I knew personally died of this virus, including a lover who died in my arms of AIDS-related PCP. I know of what I write. Your change in attitude gets my heartfelt congratulations and admiration. Carry on.
I’ve been undetectable for almost 7 years. I feel great, have no problems with daily medication (Atripla), and have the most wonderful doctor who says I will probably live to 100, as I eat properly (no fast food, lots of fruits and veggies and grains), exercise daily, and have a good attitude. Plus, I still have plenty of great gay sex.
I’m rather open with my friends about just about everything, EXCEPT my hiv+ status. Too many of my well meaning, hiv- friends do not have an understanding of patient confidentiality issues. They are too loose with others’ personal info, and I am irked when they speak of “their friend XXX, who is positive.” And, for some people, THEIR affect changes when they know they are speaking with a poz person. I hate that… so I don’t dosclose.
Very heartfelt post re. your hiv status…..yes, coming to terms w/ the diagnosis is challenging at first, but you sound very reflective and thoughtful.
I have been hiv undetectable for 9 yrs after almost dying from wasting stage of AIDS and PCP double pneumonia, was down to 140#s, a very scary initiation caused out of my personal denial of fear of being tested….how foolish of me but was my frame of mind at the time.
now enjoying a healthy and productive life, emotionally and physically…..but it still continues to be a Life journey. who you disclose to is your personal choice, I know you understand to whom to disclose due to a personal reason or medical reason.
we are blessed to have ever improving meds to help keep us healthy.
stay strong, believe in yourself and ENJOY LIFE!
John in STL, MO
It is to bad people have to get sick to realize what they have in this life time. Unfortunately a majority of gay men don’t care about who they infect with there risky lifestyles. Unfortunately AID’s is here to stay, unless a scientist comes up with a miraculous antidote for aid’s patents to regain 100% of there immune system back again. Sorry to be such a DEBBIE DOWNER here, but it is gay men reality.
I have been HIV+ since Jan 1991 and on medication since 1995. I have never let my status define me and luckily have enjoyed good health. With one exception the med’s I took early on had the side effect of my developing lymphoma. In 2003 I was diagnosed with that. Now I am retired and 75 years of age…honestly I am tired of being ill….
Ok so I am not HIV positive, I have worked in HIV treatment and prevention for 30 years. 15 months ago I had a life changing issue with a chronic illness, I lost part of a lung- I have not been able to work. I went from amazing comfortable to struggling. My attitude sucks on some days and is great on others.- It is part of life. Like folks living with any chronic disease change one factor and I could drop dead in 5 minutes…All it takes is dust, pollen, extreme heat or cold and an asthma attack triggers and … Being human is living through fear and understanding if we focus on miserable we will be–Over my career I had the privilege of working with amazing people and learning from all of them the ones that inspire me are the ones that kept living when they knew the chances of them doing so were really limited… Sometimes in life’s river we have to swim up stream really hard to get to where we need or want to be…
I’m not hiv positive but I’ve known friends who are. As long as they took their meds they were living. If you call taking a big bowl of pills three times a day living. Unfortunately I’ve lost contact with one who moved out of state. I just hope he’s alright. I remember in 1984 when I had my first back operation there was a guy across the hall with aids. His family had completely abandoned him. I wanted to go see him but they wouldn’t let me. They said he was contagious. The doctor and nurses wore what looked like space suits when they went in his room. After I left the hospital he passed away. I was so depressed about it. But things have changed now in 2015. We know how it’s spread. No cure yet. So my fellow family members who are hiv positive here’s one who supports you and cares about you.
Hello Marc if its OK would like to chat what’s your username
I’ve been HIV pos. since 1983 and am very lucky to have always been blessed with good health. I’ve been on meds since 1993 and undetectable since then. so 32 years of being undetectable, I always list my status whenever I have a profile or meet someone who I may become intimate with. Otherwise I feel it’s nobody business as far as day to day life goes. The only issue I’ve encountered is with a lot of Gay men when it comes to dating, or just sex in general. If your Poz. a lot of them won’t talk to you or have anything to do with you. This I don’t understand. Even friendship seems to be out of the question. What gives?
Unfortunately, it’s not an issue of “coming to terms” with one’s health-but one of being excluded by the rest of the “Community”. For the most part, the issue is one of people treating you “differently” and much of the gay “community’s lack of support. The fact is there is a great deal of discrimination (we are treated different, excluded, as if we are somehow dirty–I’ve always found the term “clean” particularly offensive.). It presumes that we are not clean people–this could happen to anyone, and I personally consider myself to be a very clean person. The “Community’s” lack of support has caused a schism among us, and we have been relegated to a second class status. Ironic, considering that many of those infected have been directly responsible for ensuring many of the privileges which the “community” currently enjoys, even feels entitled to, as if it was not fiercely fought for by the very people who are being discarded. It is truly disgusting. Disclosure for many means being excluded from many of the privileges that are currently afforded to the gay “Community”. There is great disparity and gay people or any affected by HIV/AIDS are most definitely discriminated against by those who fail to recognize what these individuals have made possible for them, should they choose to reveal their status. With the advent of PREP and the extensive information currently available, it is truly surprising and abhorrent that some in the community are being treated as lepers (that is those of us who are being truthful). I find the term “clean” to be a personal affront and a very insensitive, even insulting) response to those of us living, and surviving such a life altering condition. I am HIV positive, healthy and have found terms like “clean” to be extremely damaging. I AM clean. I think the general population should be aware that there is more of a danger from those who refuse to reveal than those who do the responsible thing and reveal to their sex partners (it’s really nobody else’s business, in my opinion). There is generally an atmosphere of fear, which is understandable, I would feel the same way, to be honest. However, the old and the infirm are being treated abominably with the gay “Community”. I think people need to be a bit more sensitive, and inclusive, particularly since HIV has been relegated to a chronic condition by the medical community. It’s time to support and honor those who have fought so long and so hard for so many. My gay brothers–it is time to come together, and honor the memory of all those we have lost. We are all in this together.
We have come a long way since the first cases of AIDS in the 80s. It was a certain death sentence. Young men were terrified and some thought they were being punished by a higher power.
Now the POZ are living longer lives.
How many POZ people are dying of natural causes? Anyone taking a tally? Certainly some live longer than those who are negative who drop dead of heart attacks, diabetes, cancer, etc.
It does not let u find a man to love
I’m not sure where I can get the right peoples attention on this site.
But I think you guys at adam4adam need to do a better job at promoting things like getting tested as well as options for safe sex. There is a lot of people that don’t know options like PrEP are even available.
Having a site that promotes people to meet for sex, I also think it is partially your responsibility to the community push these things into the open.
Things like having links to locations in different areas that offer free testing would be a big benefit. Or links to lgbt clinics so that people could find access to doctors who understand lgbt issues and risks.
I also feel you should take time to inform people of PrEP and what it means in this fight going forward.
Kevin, thanks for your suggestion, but I guess you are new here on the blog. If you search PrEP or “health” you will find many posts about this topic.
Dave
Have you ever thought about being open about your status? Having that weight off your shoulders might do wonders for your disposition.
tahnk you for this blog. i learned one week ago that i am postitive. luckily for me i have had the time off from work already scheduled so i didnt need to be around people in the initial stages of ‘acceptance’. i still have to find out my viral load adn my tcell count and what path i am going to be on, so the future at this point is a little scary. the doctors who have seen me so far have given me hope and belief that i will be fine and i shall live to be old. but until the answers come in i am left to wonder, and the wonder produces fear. so being ‘off’ i think is a normal reaction. i am trying to keep it in check (although i have had like NO appetite, but again, thats the fear) and even tho it has only been one week, i feel i am handling it good. The test will come when i return to work the test will come when i visit family later this month:
will something be said in an off color joke that will trigger me to be sad and scared? will others notice a change in me physically (yeah not doing normal eating for almost a week WIlL be noticed and agian the lack of eating was due to my fear and sadness).
in the back of my mind i know i will be fine, once i have started on teh path. its the not knowing that is making me feel like i am lost.
another note – i have been single for years and another thought that has continued in the back of my mind since being informed … if i couldnt get dates when i was negative, how can i if i am postive?
thank you for this blog and best of luck for your long life 🙂
I understand you out it in the blogs, but I didn’t know you had a blog until today. It’s tucked at the very bottom of the home page with a small link.
Most people on here do one thing, and that’s look for sex. Reading blogs are generally not high on the list.
How about instead of advertising porn on every refresh, you display a message about educating oneself on things like PrEP. Or a message saying something like “when were you last tested”.
I just think education should be prominently displayed from time to time.
Kevin, yeah think for a second. How do you think A4A makes money to pay the support team, tech team, the network and all the fees? A4A is a free site. So yes, it is with the porn ads that you see. Hope it’s clearer now?
Dave
Say, Dave,
I was wondering as a SUPPORTING MEMBER OF A4A (THAT MEANS I PAY TO SUPPORT THIS SITE), I was rather astounded to see that you did NOT post “my 2 cents” on this topic?
Was I out of line? Or too truthful? LAST TIME I SUPPORT THE SITE AND NOR READ OR RESPOND TO ONE OF YOUR ***STUPID*** LAME BLOGS.
I can’t believe that the money that I spent on ‘support for A4A” goes into your salary…………
Christopher Q.
MSN MPH
Christopher, wow what a great comment, FYI I didn’t delete your post. Sometimes when a link is pasted, it goes directly in the junk. Thanks for the kind words!
Have a good one!
I’ll chime in here. As far as uninfected people fearing to engage with infected people, that all boils down to basic biology. What drives our sexuality is the need to reproduce and even though homosexuality is divergent to that end, the push with all its rules is still there. We are ingrained biologically to select the healthiest mate we can get. Chronic disease in contrary to having healthy offspring, so a large part of our brains says oh hell no to sickly prospects. I’m sure people are put off sexually, if say, their partner confesses to being a cancer survivor or having any kind of chronic condition, even non-lifethreatening ones. I’m certain HIV+ men wouldn’t be comfortable with someone with herpes, they’d have an empathy and understanding, but it would still put them on edge. And unfortunately this biological bias puts pressure on individuals to start lying or concealing their afflictions. I’ve seen many a profile go from hiv+ to hiv- miraculously overnight. There would be no std’s if everybody was forthright and upfront about their conditions. I think the majority of gays out there think that poz guys have the benefit of unencumbered sex with other poz people, which is not true, different strains of hiv, a host of other sexually transmitted diseases, and that nagging “grass is always greener” better partners on the neg side of the fence, though personally it seems the guys I initially think are hot most often turn out to be poz. We want what we can’t have. AIDS probably would have had a much slower start had it not been for the rapid increase in herpes infections back in the 60’s and 70’s. Herpes was the terror word on college campuses before gay cancer and GRID started popping up. Sex always has been, is, and probably will be much further in the future, a very dangerous game. Wasn’t our last topic “Is Bareback Sex Hot?”.
Joey you made this comment, “Unfortunately a majority of gay men don’t care about who they infect with there risky lifestyles.”
While there is some truth in this comment, I still find it dismisses the responsibility each of us has to themselves. I am now positive, but was once negative. As I made the decision to have unprotected sex…I know that I am the one responsible for acquiring this disease. And, I was lied to as I was lead to believe that this person had just found out they were positive. My ex knew the person and told me he knew this guy had been positive. I was angry about being lied to, but still did not blame them for what was still my decision to have unprotected sex knowing all the risks. I was/am entirely responsible. Perhaps, some would say I was not being responsible with my health. I wanted to have sex without any barriers. I am paying the piper by now having to take meds and live with the side effects. But, I do not blame anyone, other than myself. Never have, never will.
Joey, you also say this, “Sorry to be such a DEBBIE DOWNER here, but it is gay men reality.”
Actually…it’s everyone’s reality…not just gay men. Such as the wife that has become positive because of her cheating husband. Which is a case, in addition to rape…where a person is not responsible for becoming positive. And, is the truth in your comment with which I would agree.
And, remember this…sticking your penis in a mouth or having one in your mouth without a condom is not practicing safe sex. Yet how many people claim to be having safe sex that do either of these?
Another thing…having viewed so many negative profiles with the “ddf’s,” “HIV negative ub2,” I often wonder how these people would deal with other sickness or disease which might befall a partner or someone they’re dating. I’m thinking not so well. My ex was negative, but he smoked and he had bladder cancer…I would have to put the wafer on his stoma to attach his bag.
It’s like people that don’t want “drama”…life is drama…it’s whether or not you decide to be “dramatic” about how you deal with life.
Ironically, just today I came across a profile of someone that preferred someone that is bi or married as there is less or no drama. Lol…what would their wife say about that?
Funny…the way some people see things. Or, fail to see them.
Correction…I should have used led instead of lead…in “I was led to believe.” I had that and changed it…as, I didn’t think it looked right. I was wrong.
I think there is still a stigma around it and medical issues in general. People don’t know how to handle or react to someone with medical or psych issues. Be it HIV, cancer, bipolar or other condition. I find majority of the population coming up now to be very immature and feel entitled so the issues will only worsen. A couple years back I had someone message me wanting to play. I declined politely say he was my type and his response “I didn’t want to f*** with you anyway I heard you had AIDs!” I was 35 and his profile said he was 19, but given response probably younger.
I am negative and take PReP, which unlike one person stated is 92% effective in some studies its higher. I also work in the medical field and was in the military where my exposure risk is higher then most, the two “std” I had been infected with were during my 2year abstinence period. Also condoms are not 100% either they break etc. Only true safe sex is abstinence and even then…
What it all boils down to is education. Though some people need to learn acceptance and tolerance but that’s another issue and topic.
The other issue with HIV pos is the psychological issue. When I was in a relationship my partner who was positive was always stressed and uptight. It’s what ultimately ended the relationship because no matter how much we talked about the elephant in the room it was never enough to to put him as ease.
TONY15: I’m saunaguy at yahoo dot com.
Gay people need to start by removing the HIV stigma from each other and start educating themselves. mrfriendly.org is a great way to start educating yourself and learning from guys who are already are HIV positive. We need to move away from calling it the AIDS Walk and start calling it the HIV Walk, because people live with HIV everyday and dont develop AIDS anymore when they are on antivirals. AIDS is a CD4 count 200. Actually, someone who is undetectable is safer than someone who doesn’t know their status and is positive and untreated. The most risk is having sex with someone that doesn’t know he is positive. This is the major way HIV is now being spread. Would you rather be lied to than told the truth and be with someone whos HIV is undetectable and honest?
In reading some of these posts, I was surprised that HIV issues were still so prominent and on peoples’ minds. Having lived through the whole epidemic and being HIV+ for more than 20 years, I thought I’d seen and felt every nuance imaginable. Clearly, where there are thinking gay men, there will be myriad viewpoints.
I’ve been extremely lucky in having great support from family and friends and a disposition that focuses on being positive and resourceful. In the mid 90s I learned everything I could about AIDS and HIV and discussed openly my status with gay and straight friends. I remember feeling special at first because I was one of those who didn’t need Meds so I went to the gym, the vitamin store, weekly memorial services, read POZ religiously, christened Sean Strub the new gay savior only to fall to pieces when I learned I had to start Azt and epivir. Yes, I’d made that contract with myself at 43 to live out my life with vigor and that I had 4 years to travel, make friends, visit family, fix the things I’d broken and spend every last cent. But keeping meds at bay was vital. I’m dwelling a bit on this because so many died back then and living well was a gift and waking up every day and feeling good meant one more day of health. I sit here today astonished at the evolution of all things HIV. I remember the day I was going to work and it came to me that I wasn’t going to die in my timeframe that I’d be lucky like so many weren’t but live a full life. I could go a whole day and forget I was HIV+, my biceps grew, my waist thinned up and I thought about sex more. HIV became for me something I could live with. And it wasn’t hard for me. I buried myself in work and learning French and traveling and my goal became to retire early which I did and I’m happy I did. There were moments where I was mistreated but I felt evolved enough to believe that HIV- people had a choice to not want to deal with this in a relationship. The boorish comments of DDF etc just breezed by me. If these guys didn’t want to deal with me I didn’t have to deal with them. Those compelled to lie on websites about their status really fooled nobody and the fools who accepted a 6 month window from the last HIV test needed reassurance, no matter that it was faulty. A new generation grew up where aids wasn’t the be all end all issue and I was happy about this and today I worry more about my brother’s diabetes and my sister’s cancer than I do about me.
Mind you, there is no lesson baiting here for anyone and I’m embarrassed at what may seem insensitive to many of you. The guy who asked me to use a condom for oral sex, the guy who chastised me for not telling him I was POZ while I sucked his condom sheathed dick, the man who still worried about our friendship after all these years and was he certain not to get HIV if he sat in my living room. These may be groundless worries to many but they are real to some and the fear, though lessened and manageable is still fear, like the fear I have changing lanes on the highway so I check 5-6 times even though I’m the only car for miles.
Our age is more in a whirl than 25 years ago and focused energy and persistence brought us the equality of protections with same sex marriage.mpeople can seem crass and insensitive about HIV and I think it’s due more to ignorance. Our greatest moment was our coming together and taking care of one another in the worst moments of our holocaust but the worst part of the holicaust is long over and our lives have evolved to worry about other things.
But your privacy and caution and discretion are yours to be respected. You don’t have to explain yourselves to anyone yet finding someone to talk to about it is good too so don’t rule it out. (My best friend won’t talk about it at all and he wishes I were a quieter person.) I’m sorry to have rambled on but try to be less hard on yourselves and expect less from people today regarding HIV because they are worrying about different things now. Your