Wednesday, 12 June 2013

Social Exclusion and Isolation – HIV or just me?


I have read many times over the years I have been HIV positive that many with HIV suffer social exclusion and isolation. I never through this would apply to me but sadly have realised it now does.


I have no idea how much this is to do with being HIV positive and how much is to do with me, my personality, age, circumstances and perhaps underlying self stigmatising that I am unaware of..
But what I do know it has only been so since I have been HIV positive and is getting worse.

All I know is this is not the first ‘issue’ I have experienced and even during my quite severe mental health and other ‘issues’ as a child till my early 20s and throughout PNI – Perinatal or Post Natal Illness  - I was surprisingly never socially isolated.

Even in the depths of PNI I had at least 3 often more, people I knew I could visit in the village anytime for a chat and a cuppa and feel and be welcome - even at times day or night.
And surprisingly perhaps? I always had at least one main social group I belonged to and other friends and a social life, until recent years.

Ironically when I had PNI, at times I wished I didn’t – only briefly I knew how lucky I was to have friends and a social group that accepted and liked me – as at times when all I wanted to do was rest, not just one but many people would turn up for a visit and my house would be totally  full!!!! But even though it was tiring at times I would not have had it any other way.

I think finding you are HIV positive does have an effect subjectively on how you feel about mixing with other people, or at least it did for me and especially in the beginning.

As hard as I find it is to admit, I did feel or rather fear, that I was someone people would no longer want to mix with. And as it was all new to me had no idea what attitudes would be or if I would be affected by stigma.

And sadly except for the few blatantly discriminating and judgemental encounters with others ( and sadly there has been a few but at least then you know how you stand) I have no way of knowing if I am being judged or stigmatised or if my status is any barrier to my being accepted or liked or wanted as a friend or part of a social circle.

As few would tell you honestly.
An I am afraid although I have toned it down a lot now, I coped with this fear of rejection due to my status by telling any group I joined about it and being very verbal about my status. And I know I was over the top with this. And that nerves, anxiety about being accepted and fear of being rejected made me loud and almost manic at times in new social situations or even in groups and classes.

I have improved, I am still a little like this, but not anywhere near as frantically trying to make friends and be accepted HIV and all, and too over the top than I was 4 to 6 years ago. And while I still share my status I don’t do it in such a pushy, over the top and inappropriate way,  but my fear of rejection means I am not quite there as yet.

But what I do know is apart from one friend, who is also HIV positive, I now longer have ANY regular friends or a social circle, or any friends that I see regularly and my social life, friends get smaller and smaller since diagnosed as people seem to drop out.

And my biggest disappointment was fining that most people locally to me, or even in Cornwall, who are also HIV+ do not want to mix with me on a friendship level. What was the most disappointing were other Poz women.
I do know why, or some of the reasons why.

Few in Cornwall are open about their status. None of the other women I have met yet in Cornwall are publically open about their status or even open to all their friends and family. Not even my only local Poz woman friend. She is open with ‘some’ and I only mean some friends and family, but by no means is publically open. Many have known her for years and do not know her status. Which is totally fine by me. I am not asking or expecting any to be publicly open as I have been.

And on that note, the reason we are friends is she made a leap of faith and believed what I always say – that I may be public about my status and talk about it, but I will not disclose another’s status.

She took the risk, and we have even been in situations whereby she has been there with me and others asking me about HIV or my HIV and they do not know hers, even when this has happened with her friends present.

But no other HIV positive local person has taken that risk with me. I am aware that the fear is that by mixing with me, as I am publically open, I will in some way ‘out’ their status or it will be guessed they are HIV+ too.

I have been told this directly by some. I have also been told I am too loud!! This meaning both that I have too big a mouth in that I talk about my status publically and therefore may talk about theirs and that I am too loud as a person – which is probably true as nerves in social situations make me a bit manic and loud
I did have hopes this would change but it has been 6 years now and I have given up trying.

But I feel very privileged to have met the one local + woman I have as she is a wonderful person and a loyal friend , even if we don’t see each other socially – explained below why not – I have been very lucky to have met her.  

But as to why I am in general socially isolated, outside the HIV area, I am not totally sure? It could be that I am open about my status and verbal about it, it could just be me, my personality – the fact I have always had difficulties understanding social norms and thus am an acquired taste! – it could be maybe a self fulfilling prophesy? And it could be other factors.
I simply don’t know? All I know is despite my husband, I am lonely.

*It has to be remembered that you can be lonely even when you have a partner. Many especially those with HIV have said how luckily you are to have a partner and yes I am and I KNOW!

However I have been together nearly 30 years and much of that time he was away at sea so my friends and a social life has always been important too.

Anyway, humans are social animals and no one person can fulfil all your social needs. Perhaps your very intimate and personal ones and I am very glad that unlike some I do have that – we have that. But Not even a couple is an island. Or rather it is not healthy to be. We need others in our life.
And it has to be remembered that we are BOTH socially isolated and excluded! If one of us was not and had a social life and a group they were socially accepted in and social places to go, the other would not be as isolated either.

Barry is as socially isolated as me, probably more so in fact. The difference is he does not care as much as I do and does not have much interest in going out socially..

But I would like to go out socially with others or even just have a few friends I could pop around to see and I would love not to feel so socially isolated and included.
In fact I would even be happy with just feeling able to pop round in the day to another’s house or they pop round to me for a chat and a coffee now and then. Like it used to be for me once .

While I have to say someone did pop around a few weeks ago but I was late for a class sadly and had to go out, but I don't feel I can just turn up at hers as she still has a child at home, and works and a busy life so I never know when she will be in. But I know I would be welcome and will try to go and see her .

However it has been some years since in general I have been invited to pop around any homes locally

In terms of social events or gatherings,  it does not help that we live fairly remotely and most social occasions we are invited to, if not all, involved driving 8 to 20 miles and are in the evenings and both of us are just too tired most evening to even contemplate that. Some nights we go to bed at 7pm and sleep until 7am the next morning.
Due to our fatigue I am well aware that in part we exclude ourselves socially as we are just too tired for anything but very local events in the evenings.

Most of the things we have been invited to in the last 3 years have been via my friend, who surprisingly goes out almost every night and I am always welcome to go along. But she lives over 17 miles away and while in the day that is OK, at night it is beyond me to drive that far and especially back after and evening out. I feel it would be dangerous, I am just to tired.

And of course while my friend does come and visit me here as I am never invited to anything here, there is nothing I go to nearby to me that she can come with me too. So she just pops round for a few hours and we do not go out any where.

Most social things Barry and I  have been invited to, and that is few,  do not start until after 7pm, most later and we are both often too tired to even move by then!

If the few social things we are invited to now were nearer, in the village or even in the two nearest towns we would, or I would if Barry did not want to go which is likely ,I make the effort anyway.
But sadly all, in fact all, the more local friends in the village and surrounding area we made over the years here have moved out of Cornwall or in Cornwall but some distance away or their lives have changed and we are not part of it and we have not managed to make new connections in the village and locally on the level that we would be invited out by anyone or to their homes.
I have no idea if this is due to our being HIV positive or not as if it were no one would tell us, but I think in part it is. As I have been very public about our status. It has to be a factor even if not the main one.

But I also know it is about us as well. Barry just is not a social person. He is a very friendly person but he is very self contained and has never had or wanted much of a social life., He is happy to occasionally pop round in the day to the couple of friends he has for a chat or chat to people if he meets them, but going out socially has never been his thing.

As for me, I have always been an acquired taste!

I can be prickly and have strong views and while once you do get to know me and like me, I know I am liked, but not many want to make the effort. 

When I was included and meeting people locally and making friends, I had things in common.  A young and then teenage child, having to take her to school, go to activities with other parents etc., I was working and was active on a committee in the village, horse rode and owned horses and met others that rode, I had things in common with others around here and they gradually got to know me.

I also know that younger people would not want to share a social life with us. That it is only those our age or within 10 - 15 years either way, that it would be feasible with. Partly because I could not keep up with anyone younger socially!!

This cuts down the possibilities, as most who have moved into the village in recent years as the older ones moved out have been a lot younger than we are.

But sadly know that there people of our age or older  locally that may also be sitting at home, wanting to be social feeling isolated and not knowing how to make that sort of connection with people. But it is almost impossible to meet these people. Even though willing there is simply no where those people around our age form this area go! Except the pub, and I have tried that and it has never lead to any social connections bar saying hello in the street and I can't use the pub very often at all because if I am their on my own or just with Barry there is nothing much to do except drink , and I can't risk that as in that situation I will drink to much and regret it!

Before anyone says why don't you make the effort!!! Well I do when I have the opportunity. I am always friendly and willing to have a conversation when I do meet local people. But it has to be understood that I live in a village that now has no shop - the shop when it existed was somewhere I met a deal of my local friends. If you walk through the village, walking your dogs or whatever , you rarely meet anyone in the street, most people keep themselves to themselves now, and I have no child to share activities with other mothers.
There is a pub, but I simply do not feel at home there anyway, or wanted there, probably its me, who knows??

Those I have met in the last few years in the village and locally do not invite me to their homes. I can count on a couple of fingers the amount of times I have ben invited, or it I have visited on my own initiative, the number of times I have got past the front door or further than the kitchen. 
I know that some in the village of similar age to us, do have social occasions , parties or go out together .
Because ironically I see the pictures of these on Facebook and through their updates.

I do not want to give the impression I never go out.
Me and Barry often go for a meal, early evenings in the local town or otherwise nearby. Sometimes we walk the dogs then stop of at a pub or café.

I do various groups and classes. Over the winter I have done oil painting, photography and a painting a drawing class and am still doing two of them for another few weeks until the current term ends and will start again in September. I did also go to a painting club which I could not go to recently because my painting classes clashed. But I will go back when they don't.

I have tried a few local singing groups in the last few years, and one was OK, but sang stuff I really did not want to sing - I stopped going and that was my choice entirely, the members were always welcoming to me and wish I could have continued just to be part of singing with others, but I felt I could not. I may explain one day.


But the other two both turned out to be unmitigated disasters!!

Yes I know for reasons at least 50% mine but at least 50% theirs and mostly that 50% was due to the attitudes and remit for running them by the people who run them and it hurt.

Both were a disaster in the end and I realise I can never go to any groups or activities where, competition, ability in the activity and ability to perform at some level they require,  matters more than participation and inclusion.
It seems that singing groups like this are few and far between and I have not found any that sing my kind of music as it seems to me it is so riddled with ego and mainly the ego of the people that run them and make a living out of it to by charging you up to £8 for 'rehearsing' and then don't want you to sing if there is a performance because you are not in their eyes 'good enough' either as a singer or a person!

Sorry so annoyed about my experience with those singing groups!! Even if I am the worst singer in the world or somehow socially unacceptable to that particular group, they were community choirs or groups and as far as I was concerned it should not matter if I could sing , or sing how they wanted

The other groups, classes etc I go to have been fine. But then no one would say you could not participate, even exhibit, if you wanted to, whatever your work is like from an objective perspective. Enjoyment, inclusion participation and learning is what they have been about - not making the leader look good! 

Oh well I have dribbled on for far to long, trying to analyse the reasons it has become this way for me after a lifetime of having a lot of friends and belonging to a lot of social groups that I am now so socially isolated.
At the end of the day I don’t really know the reasons, just that it is that way!

I know if I want not to be this socially isolated I have to try. I am going to have to try driving the 17-20 miles to the few things I am invited too, go out more and try to reconnect with local people, and makes at least acquaintances with people in the village again.

I am going to try!

Update - June 2013

I thought I would update the situation. It is now 2013, we are still together and content to be together.

I rarely write on my blog now, but keep it open because I know this journey is not finished, that one day I will have something to write again.

But for now we take our HIV medications, get on with life and cope with the health problems that have come along, and they have. Some caused by HIV or the meds , some not - Barry prostate cancer and diabetes. The diabetes  caused by meds, the cancer not.
 Me Avascular Necrosis in the form of Kienbocks, which could be med related osteoporosis, which is for definite due to the meds I am on which has been admitted one of the drugs I am on should not have been a first choice for a post menopausal woman as it is know to cause osteoporosis in much younger people than me and I did not have it before - I know that for sure as due to my accident in 2003 I have had bone scans before and this developed 2 years after starting this med.

I also have arthritis and  worsening of my mobility due to my damaged leg. We both suffer chronic fatigue which makes like hard and high cholesterol which is drug caused .
But in the main we continue like many older couples with health problems - I am now 60 he is 61 .

But we have survived and are doing well in terms of HIV. Both of us have undetectable virus loads and CD4 counts above 600, which considering our age and our late diagnosis, is remarkable.
There has been some recent hopeful research that says that those with controlled HIV, who are undetectable and have a  CD4/Tcell count of above 500  have the same mortality risk of peers without HIV

This is heartening to read as previously to this the research pointed to a shorter lifespan, not much shorter if doing well on the meds, but that you could expect between 5 to 10 years less.

However I still believe HIV, or the meds age you. That age related conditions may happen earlier for Poz people than if they were not Poz and for some cause health problems that you may not otherwise have had.

 In fact I know some of what we have is HIV/meds related, and for some of us, me included, but not Barry, being HIV positive takes a toll on your mental health and general wellbeing.

But the prognosis for those with HIV is improving and improving all the time, and with new meds coming on board al the time that are more easily tolerated and less damaging, the picture is a lot more hopeful for us all that have access to these medications. Sadly there are still those, and surprisingly in developed countries like the US even, that do not have access to these meds. But we do and we are very lucky to have HIV now and not 20 years ago.
So for now we get on with our lives. Barry has even started and continues the business letting out a Yurt, camping and a small flat on our smallholding, to supplement his small pension.
The fatigue and other factors sadly limits our social life. I would like to have more of a social life, I am not sure Barry would , he has never ben one to go out socially much, but I used to be a social animal.

However we are living our lives as best we can and supporting each other.