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Print-FriendlyThe Loneliness of the Long-Distance HIVer
December 1, 2013
"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
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Dave R.
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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.
Did you know that in the UK, 1 in 5 people go to the doctor not because there's much physically wrong but just for someone to talk to? It's now a big enough problem to make them call for action on national news. Doctors aren't quite sure what to do about it and who to refer people to. In these days of shrinking budgets, doctors have to account for every minute spent with patients and they're not social workers like they used to have the luxury of being, although that's a role they're having to assume, especially in times of financial crisis and especially as the winter evenings draw in and the temperature drops.
It's dangerous to make generalisations about society breaking down and not caring for its vulnerable but its vulnerable are asking for more help and someone has to give it. Having to deal with a growingaging population, the doctors don't mind putting in the overtime, after all healing the mind is healing illness but they're limited in the time they can give. People with HIV are a group living further and further into old age -- something that was inconceivable a few years ago. But while longer lives are of course welcome, it brings new challenges and isolation for the person lacking the energy to keep up with the "scene" is one of them.
It's also coming up to that time of year again. The days are getting shorter and the weather is getting worse and if people can't get out and about, their feelings of isolation increase. Thanksgiving, Christmas, New Year and other celebration days are hell for the lonely -- they just close their eyes and wait for the universal bonhomie to pass because these days highlight their exclusion even more. There's also a huge stigma attached to admitting you're lonely; for everyone, not just people living with HIV. Nobody wants to be branded a "Loser" with a capital "L" but the gay man or woman living with HIV and afflicted by loneliness often feels just that and sadly, when they go out amongst their own kind, it can be as if that "L" is imprinted on their forehead.
This article is not meant to provide answers but rather to state an obvious case. As you celebrate your holidays, know that there are people in the middle of crowded dance floors, out on the streets in the cold, in care homes, even at your dinner table, whose pain hurts like hell without you knowing it. If all you can spare is a thought for these people than at least spare that thought but if you can do more please do it. You can do something; it just takes a little will-power and maybe the help of other friends.
I will say this though: The individual has got a role to play and can change someone's world substantially for the good but be gentle; don't dive in like an enthusiastic re-born "Buddy." Take your time; be subtle -- a lonely person is not your new personal project or cause. Be genuine and don't try to force your agenda on them. Suggest, encourage, offer practical help; be a good listener and know when the hell to back off. Let the lonely person know you're there, if they want you; but don't be put off by what seems ingratitude. Don't be half-assed: If you commit, commit properly and don't pull out when things get tough or you run the risk of doing more damage than good and convince them even more that the world is not to be trusted.
And please don't forget; sadly some people are lonely for too long and take their own lives as a result. You really don't want to be the person reading about, or standing at the back at their funeral, wishing you'd known sooner and been able to do something about it.
Much More Information:
I promise, if you can find the time to click on one or two of these links, your eyes will be opened to real people's stories and all the statistics you need, and you'll realize that this is a much bigger problem than maybe you thought.
- Singles With HIV Battle Loneliness
- Loneliness Hurts
- Being Poz = Being Lonely?
- HIV survivors: alive, but facing poverty, loneliness and prejudice
- Loneliness and HIV-Related Stigma
- Loneliness, Isolation Among Saskatchewan HIV Patients
- Is Loneliness Part of the HIV Condition?
- HIV and Relationships: How to Avoid Loneliness
- The Lethality of Loneliness
Read Dave's blog HIV, Neuropathy and More: Avoiding Becoming a Nervous Wreck.
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