Positive Life NSW Blog

Looking after each other when fatigued with HIV

Posted by on in Advocacy and Policy

Looking after each other when fatigued with HIV

Back in the early 2000’s when I was managing the PLC, a poz gay man sidled up to me and asked for a cab voucher to get home. I asked him why he couldn’t take the bus and he replied; “I’ve got HIV fatigue”.

Well, it’s not that type of ‘HIV fatigue’ I’m talking about here. The fatigue I am talking about is the kind that comes from living for decades with HIV, from dealing on a daily basis with the impacts of multiple debilitating health conditions and struggling to pay bills and engage socially. I hear you ask; “hasn’t HIV become a chronic manageable health condition where you take a few pills and live an otherwise unremarkably normal life? Well, not for everyone it isn’t.

The reality is that living with HIV in 2015 can range from quite straight forward to extremely complex and difficult. While about 40% of PLHIV respondents to a recent Positive Life survey had well controlled HIV and no other major health conditions, another 45% had one to three additional health conditions, and there were about 15% who had either advanced HIV disease and/or four to eight additional health conditions. Many of the people in this last group are dealing with a burden of disease that is life-long and unlikely to improve as they age. Can you imagine what it would be like to organise and attend medical appointments for that many chronic health conditions?

We also know that a substantial percentage of people with HIV are impacted by low income, and this affects their quality of life. Poor health has made them either unable to work or they are too old to re-join the workforce or they work part-time for health reasons. At the same time, Sydney has become one of the most expensive cities in the world to live. If you are unemployed or have no alternate source of income to meet the rising cost of rent, utilities and food, life can be extremely burdensome. There is a clear relationship between poverty and poor health. Poverty can create emotional distress and limit social interaction. I’m not saying that everyone who is poor is unhappy and/or socially disengaged. We human beings are a remarkably resilient lot. However, if you consider the combination of disease burden, low income and social isolation, it is unsurprising that some people with HIV get fed-up, despondent and sometimes reach the point of what we call the ‘Fuck It’ factor.

So what does “fed-up with HIV’’ look like? It looks like self-isolating; it looks like non adherence to medications (including HIV and other medications) or not following through with medical referrals and appointments; it looks like overindulging in alcohol and psychostimulants; and it looks like a gradual disengagement from prioritising health. Results from a 2015 Positive Life survey tell us that there are as many as 8% of people with HIV in NSW who are to some degree fatigued and disengaged from health care. As one survey respondent commented: “I have been HIV-positive for 24 years – almost half my life and I try hard to keep up with life as an HIV-positive gay man, but sometimes it get really hard. I’m just over taking bloody tablets and going to medical appointments.”

While modern treatments do prevent HIV–related disease progression and life with HIV may be relatively uncomplicated for those more recently diagnosed, we should also be aware that living with HIV can be tough for those with multiple debilitating health conditions. These people spend large amounts of the time maintaining and managing health, as well as negotiating a life constrained by low income. Positive Life runs regular social groups and other programs to provide opportunities to socialise and develop new friendship networks with people with HIV. However there is also a role for our community, friends and social groups, and for HIV-positive people to reach out and make sure that our mates and our fuck buddies don’t succumb to despair and the ‘Fuck It’ factor. When you see someone you know starting to withdraw and isolate; stop taking their medication(s) or go off the rails; reach out and invite them over for a drink, or a meal, or a walk in the park, or whatever. We all have a role to play looking after each other.

Also published on GNN/SX

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  • Guest
    vincentcray Wednesday, 19 August 2015

    Thanks.Lance .ive been HIV 27 Years as the older I get the harder it becomes Meds have caused trouble .and being long term HIV now is throwing up more issuses. Than comes every day living .trying to stay social .its so easy it stay in doors . Food is costing me more every week . And much more

  • Guest
    Groover Wednesday, 05 August 2015

    I live this every day. Thanks
    Lance for bringing this to people's attention. For too long the voices of those PLHIV Members who've lived with HIV for 20 plus years ( me 27 years ) voices have been absent from current discourse in HIV

  • Guest
    Gary Thursday, 06 August 2015

    Same here.

  • Guest
    Lance Feeney Friday, 31 July 2015

    Hi Tim, thanks for commenting. Positive Life takes very seriously the challenges of living with multi-morbidity and low income and HIV. We're working on a range of strategies to improve the community response.

  • Guest
    Tim Friday, 31 July 2015

    Great to read this acknowledgement of something that is very real for people who have carried the virus with them for so many years now. It's even harder now for long-termers, psychologically, to be living and meeting with all the ongoing challenges in this new era of 'everything is wonderful now' promotions. Recognition and acknowledgement of this reality really helps.

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