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The Loneliness of the Long-Distance HIVer

December 1, 2013

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"Then a note was played and word was sung and I just drifted off to another place and time. I no longer heard the music. I was in my own thoughts. The place I ended up in was loneliness. I was in a crowd and felt so alone. Something that I have been battling for the past few years off and on now. No time is a better time, be it morning, noon or night; this 'place' always finds me. And the funny thing is I can't describe it in words, it's a feeling that I dislike so much but know so well." -- My Name Is Trista and I Am HIV Positive

Dave R.

Dave R.

Sometimes the weather is so bad you're forced to stay in and watch people hurrying by, heads down, or shielded by umbrellas, as if they deliberately don't want to catch your eye. The rain spits relentlessly onto the windowpane and although you're warm and dry, you long to be wet to the skin and hurrying with them, as companions to wherever their destination may be. Those are the times when loneliness cuts you off from the world and exaggerates your belief that every man is an island after all.

Other times, to just do something, you go to the shops; to mingle and feel part of a crowd; or to chat with the shop assistants and at least interact with others in however meaningless a fashion.

Or if not the mall, the bookshop, the cinema, the park, the bar ... anything to re-establish human contact, affirmation, validation, reaction. Loneliness can drive you to do anything to avoid isolation and staring at the world from behind the curtains, the blinds, the single-stemmed orchids on the windowsill.

Then again, you might go to a sauna for warmth; literal all-embracing warmth but also human warmth. No words need to be exchanged as they probably would elsewhere but the possibility of physical closeness attracts you like a magnet.

Or else what's the point of existing; why keep fighting to stay alive when so many are already gone? Why keep taking the pills every day that keep you alive, keep the virus at bay; for what; for whom? Physical, personal contact with another person provides proof that you're still alive and physical, personal contact is a daily aim for many, many long-distance HIVers who sometimes end up craving little else.


Some are too far gone and have lost the will, the energy and the desire to make the effort to keep on looking. They may be sick, or depressed, or fatigued or convinced that the world doesn't want them, or care if they exist or not. Those people need to be found by someone close, or by a complete stranger; it doesn't matter as long as they're found.

Don't get me wrong; the vast majority of lonely people are not suicidal; they want to keep on living; they want it to get better and they want to rejoin the world they left behind in the good times, before the virus, or old age, or a myriad of other reasons took friends away ... they've just forgotten how, or lost the courage to take those fearful and dangerous first steps to recovery. They stand still in their lives; unable to move on, or progress, or make new friends. Loneliness can be paralyzing.

Many people like this turn their homes into fortresses and devote their emotions to the TV, or the computer; or smoke, or drink, or eat, or do drugs to dull the edges of the pain loneliness can bring. They can shun well-meaning attempts by others to bring them back; not because they don't want to be brought back but because they're scared they just won't be able to cope any more amongst people still full of optimism and hope. It's a vicious circle: Loneliness breeds loneliness and turns its victims back in on themselves so that in the end, it becomes just too damned difficult to see any way out.

On the other hand, some people throw themselves into the world of anonymous sex. If they're still fit enough, you'll see them wandering like ghosts through the corridors of the bathhouses, or sitting in corners in the bars. They may even stare hopefully out at you from the confines of a thumbnail image on an online profile, but all they want is a warm body to wrap his or her arms around them and make them feel valued again. The sex isn't important but even in the dark, they can feel attractive and wanted again in those few fleeting seconds of orgasm before the other rushes off back to their more-fulfilled lives.

Before you accuse me of cheap melodramatics and sentimental over-statement; there are hundreds of thousands of people living with HIV who are in precisely these situations to a greater or lesser degree. How many? How long is a piece of string? Maybe you know some of them. Maybe there are people you call, or mail, or text but hardly ever see, especially socially. Lonely people are also often great mime artists; they can put on a face to fool the world while underneath they're suffering in silence and withdrawing even further.

Where's the proof you might say?

I did do the work as I would normally do with subjects like this and researched the facts and wrote another thousand words to prove that I'm not exaggerating and then decided to delete all those facts and statistics. Apart from the fact that you shouldn't need to prove the obvious, readers (myself included) quickly glaze over when faced with endless statistics and percentages -- they become meaningless. You can do your own research by googling "loneliness and HIV" and you'll be shocked at the result; there are hundreds of sites solely devoted to that subject alone. Or you can click on some of the links at the end of this article if you're desperate for proof and don't believe "the pathetic old git" who's written this article ("probably talking about himself!"). Otherwise you're just going to have to take my word for it and look around you at the people in or out of your circles.

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This article was provided by TheBody.

Reader Comments:

Comment by: TOMMY DUKEUR (BERKELEY, CA>) Sun., Jan. 12, 2014 at 11:11 pm UTC
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Comment by: Tayo (United Kingdom) Wed., Jan. 8, 2014 at 1:06 pm UTC
thank-you for sharing - every once in a while when I get on this website, I am reminded I am not alone in this situation. And that others do understand and feel as frustrated and hemmed in as I do.
I am one of the people who uses my GPs' as a support and it is much appreciated & constant since I was diagnosed almost 15yrs ago.
Now I know why I love chatting to shopkeepers and people on the street etc. it's my only chance to be viewed as just a character without history &/or demands.

To those who think our loneliness is self-imposed it isn't - I think it links up with the symptoms of depression that come & go, as we cope with our lives as they really are. Not as the TV soaps portray us or reality shows.
Some people simply don't have the joy of true friends or supportive family anymore. Some friends and family cannot provide the kind support we as individuals may need over the ever increasing years, and physical & mental symptoms. So our loneliness creeps in overtime.
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Comment by: Joe (Billings, Montana) Wed., Jan. 1, 2014 at 1:48 pm UTC
I don't know why but this article reminds me of the Beatles song Eleanour Rigby
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Comment by: Cathy (Southern Missouri) Wed., Jan. 1, 2014 at 1:43 pm UTC
We use to invite our elderly neighbors over for the holidays. They didn't have family nearby so we didn't want them to be alone for the holidays. I say use to because she passed away a few years ago and he moved to Indiana to live with his oldest son. I'd do it again though for anyone who might be alone for the holidays.
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Comment by: Kelly (Vermont) Wed., Jan. 1, 2014 at 1:42 pm UTC
"How far that little candle throws its beams! So shines a good deed in a naughty world."
~William Shakespeare

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Comment by: Phebess (USVI) Wed., Jan. 1, 2014 at 1:41 pm UTC
Yeah, the holidays are a rough time for a lot of people. (Our family used to invite all the "orphans" we knew, and I carried on that tradition when I had a home. We're just invite anyone who didn't have family nearby. Including lots of our teachers. It was always fun.)
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Comment by: MATSTRAZZ (BOSTON, MA,USA) Wed., Jan. 1, 2014 at 8:56 am UTC
As a long term survivor, sick in 1979 diagnosed in 1983. seroconverted in 1990. S it had been over 30 yrs. Lost over 200 friends partners, and people I knew. Why is there no long term survivor groups? Why is HIV/AIDS a forgotten infection/disease, in the USA. Know two people alive from back then, one an ex partner, and the other in my HIV/AIDS group. AIDS ACTION in Boston destroyed the groups over time. They spent the money, on lavish items, and never bought a central space. LARRY KESSLER and I had way dif views. I thought we had to hunker down for the long term, he was riding the wave of money. When the wave passed, he retired, will lavish benefits. the next director, dipped into the funds for herself. In Boston MA there is now only the living center. When I needed housing , market rate, they never showed, and never returned my calls. Now living in a rest home (HALE HOUSE) cause, nobody cares. My remaining family is, manipulative, abusive, cruel. But I am a family Biz with them. Lonely is not the right word, it is a hundred times worse. Forgotten, deserted, shunned by GAY people under 40, I am 57. We are the poz ones who they feel are outcasts. Young men get and give HIV before they even know they have it. No other disease/infection gets people shunned like this. Billions of dollars for other countries for "them". But diminishing funding for people in the USA. People waiting on lists to get HIV meds. The death rate will be climbing again, as all the meds fail. It is all so sad.
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Comment by: Eric M (Bethlehem PA) Thu., Dec. 26, 2013 at 4:25 pm UTC
hurt. just hurts
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Comment by: Conchita M. (Dallas Texas) Sun., Dec. 8, 2013 at 2:27 am UTC
I am so glad you wrote this. Everything you say is exactly what my therapist says and I'm going to send it on to him so he can give it to other people he treats. I have HIV since 2009 and my family rejected me completely because I was due to get married. I am lucky that one friend saw what was happening to me and gave me support otherwise I think I'd be dead by now. Thank you so much.
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Comment by: Ajay (NYC) Thu., Dec. 5, 2013 at 2:42 pm UTC
Carrying on from the last comment:
Sexual partners are an issue for disclosure which is complicated as they are likely to be at risk. Regular sexual partners with whom you share more than a fleeting moment and have some form of emotional attachment definitely need to be told. For casual partners, the jury is still out there. As long as our viral load is indistinguishable, our CD4 high and our medications regular, the use of condom and safe sex is enough to assuage chronic guilt. The key here again is reasonable and responsible. And for that each is responsible to their own conscience.
Dave, when we make so much out of our loneliness and try to attribute it to HIV, we do ourselves a great disservice. We stop our own march to normal life by attributing this disease with supernatural powers to destroy our lives in ways more than physical. It need not be so. HIV is hard enough without giving it more importance than it needs. We all need people to love us and to be loved by us. Well, letís stop making it harder by amplifying the effects of HIV.
I have a lot to thank HIV for, including the appreciation of the today, this passing moment and the happiness that I am feeling now. I am happy today with a past I cannot change and a future that may never come. But this present moment, this today is mine and I cherish it with all my heart, without worrying about who is discriminating against me or not. I am thankful to HIV for this appreciation which I had ceased to cherish.
So much to be thankful for. Should I be lonely?

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Replies to this comment:
Comment by: MAT STRAZZULA (BOSTON, MA,USA) Wed., Jan. 1, 2014 at 9:17 am UTC
If you know u have HIV not to tell a partner is dishonest, and can be a crime in many states. Every person has the right to know. HIV/AIDS needs no supernatural powers, it is a devastating disease all by itself, and the meds have nasty side effects. Anybody who says HIV or Cancer, is a blessing, needs time with a shrink. HIV is worse than cancer, first it never get cured, second, it is infectious, third you get it threw sex. In the USA STD's are treated like a curse from God, cause our sexual values are very messed up. The right to life and medical treatment is more important, than the right to marry. So now in Boston MA I can marry another man, but may not get good medical care. Only 20% of people on meds (HIV) have good viral control. 1/4 of the people with HIV do not know they have it. The lie is that you take a few pills and live a wonderful life. The truth, is you take meds, that have very nasty side effects. Wondering when the meds will fail. And like me many now have no new medical options. We are going to die very nasty death's. Just like the over 200 people I knew who died of HIV. The worst of it is now nobody is talking about the truth. We are forgotten. People think that HIV is not a problem anymore. Over half of the infections in the USA are in gay men. Yes it is a disease that hugely impacts gay men, but is no longer on the radar. Every gay man should organize like we did in the early days. More of us are dying now than then. Our lives are forgotten, and out deaths not talked about. Every other day a gay man in MA USA dies. Where is the outrage???

Comment by: Ajay (NYC) Thu., Dec. 5, 2013 at 2:41 pm UTC
I read your article on loneliness with interest. But loneliness is an urban phenomenon and not really specific to HIV+ people. Urban life with its emphasis on individualism and breaking down of family relationships and ties is the primary reason for the rise of loneliness, especially among older people who have less energy to make the effort of keeping up with relationships and friendships. And the reality is that when we are younger, we do not bother much about ties and considered them a hindrance to our individualism and freedom. When we get older, if for some reason, we have not got married, had kids, or found steady relationships, we get lonely. Well that is how life is, HIV or no HIV.
Many people living with HIV worsen their feelings of loneliness by secrecy. It is hard enough to live with HIV and its uncertainties without making it doubly difficult by hiding something which needs no hiding. A reasonably open attitude to disclosure with the patience to explain to the unknowing gives better results of friendships and bonds that nurture us through good and bad times that this disease is likely to bring. I decided from day one not to bother with secrecy within limits. All my family, extended family, friends and a lot of facebook friends are aware of my HIV+ status. When I tell anyone, I take the time to explain that it is not a contagious disease, not a killing disease, but something which I call lifestyle management issue with proper medication. I also emphasise that though there is no guarantee of longevity, I expect to be around for a very long time. The openness and patience has paid off and I have a strong support system . Slowly one by one, I have told all my extended family including cousins, nephews, nieces and their families. I may be an odd case, but till date I have not experienced any overt or covert discrimination or change in attitude. I am still invited to all family functions with all respect that I am due. Ditto for my friends.

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Comment by: Pete (Australia) Wed., Dec. 4, 2013 at 10:16 am UTC
I know how it feels. I've been HIV since 1986 & along-term "survivor". Now in my 50's, there is this constant ache in my chest that I will remain single until I die. Why, you ask? Because despite having had a few partners since then, I have been single & celibate for the past 7 years. I lead a very full work life, which keeps me well & truly active, but when I'm driving home, I remember that I have no one to cuddle up to & share our day's events with when I get home. Even on a dance floor, seemingly having a great time, there's this inner hollow feeling of not sharing it with someone you love & are loved by. I've known bouts of depression on & off since I was diagnosed & for the most part have been able to deal with it relatively well. But as I get older, it gets that slightly more difficult because you really feel as though no one gives a damn. Little things will trigger something that you thought you'd overcome or buried, but the tears start & you wonder if it would have been better to have passed along with many of your friends. My family don't "get it" & many of my negative friends don't "get it" because they've never walked in my shoes, so you put on a brave face & convince yourself that tomorrow will be a better day, hoping or wishing that just maybe, maybe there's someone out there that I've yet to meet that doesn't see my status, but instead sees the beautiful human being that I am.
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Comment by: Mico (Washington DC) Tue., Dec. 3, 2013 at 9:16 am UTC
I've had hiv for 13 years, dealing with the neuropathy and body pain, with yoga, walks, etc., because I force myself to do so.

As for this loneliness, yes, I know the feeling and want of being held, touching, it's not the size of the man's 'manhood', it's being with a man, who knows how to touch me, reach me, connect with me, where I return the same back. I've learned there is less of it as I age and there are less of my age (mid 50s) or those into my same age. It's true, it's best to get out and about, do something, though there is still loneliness, it's best not to lock oneself up in the home, mindlessly watching the media.

Loneliness is hard, without hiv, it's difficult with hiv I have grown children and a handful of friends, I am told wherever I do, there is someone whom, I make a friend. I just find people talk and enjoy a conversation, quick or long.

I'm one of these guys, who attracts the lonely partner in a relationship, sexless, yup the 'other man'. There is a loneliness in it too. Yet, it's not completely lonely.

I learned long ago, not to be 'Richard Cory' who everyone thought had it all, but one night put a bullet through his head. Perhaps, loneliness affects all of us, regardless of hiv status, it's how we deal with it too.

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Comment by: Keith (Albany NY) Tue., Dec. 3, 2013 at 6:58 am UTC
Thanks David for the encouraging words.

I don't need the statistics! I understand to well about being lonely! With or without HIV, loneliness has a way of stealing life.

I understand too well about wearing my mask tightly so no one knows. I often find myself going to the mall or even to walmart (alone) just to be around others.

I do OK during weekdays when I have schedule of work and responsibilities but evenings and weekends are tough.

Part of me longs for life as I one knew it, while another part tempts me to throw in the towel.

Your article reminds me that I am not in this battle alone.

Thanks again

Keeping up appearances but struggling to do so!
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Comment by: William (USA) Tue., Dec. 3, 2013 at 6:32 am UTC
Recently, my negative boyfriend of six years, decided he was going to breakup with me! This was much to my surprise. But to add insult to injury, he told a number of people my health status! He work for a research lab! This has set me back beyond belief. I just celebrated my 60th; barely celebrated Thanksgiving and now have to look forward to Christmas! I want to crawl in a hole.

I have been positive since the early 80's, and yes, I am thankful for that, after losing so many close friends. But the stress and loneliness always seem to peek through. I have thought about ending it but after losing so many, how selfish could I be? But it is so difficult to keep your head high and believe you are worth anything!

Thanks so much for letting me release my frustrations.

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