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General health & accessing healthcare, mental health, health condition, illness

Living with illness or a health condition

NOTE: Quotes are presented word for word apart from minor editing for readability and clarity. Identifying details have been removed. Square brackets show text that has been added, e.g. ‘I want to maintain [my current level of drug use]’. Ellipses within square brackets […] show where text has been removed, e.g. ‘Counselling was good but […] I would have liked more information about other treatment options’.

Of the people interviewed for this website, many describe themselves as healthy and say they have not experienced significant periods of illness. However, some live with a chronic health condition or have experienced a period of illness (see also Living with a mental health condition). Here they talk about their experiences of living with a range of health conditions. In some cases the illness is described as connected to alcohol and other drug use, in others it isn’t. For those with a pre-existing condition, some say consuming alcohol or another drug has helped them to cope with the symptoms of the condition, while other find it makes their condition worse. Living with an illness has led some to cut down, stop or otherwise change their consumption (see also Changing patterns of consumption). A few say they’ve suffered complications while undergoing inpatient treatment for a health condition as they had to suddenly stop consuming alcohol or another drug while in hospital. Undertaking alcohol and other drug treatment led some people to access treatment for another health condition.

Chronic pain as a result of an injury is part of life for some of those we interviewed. Several explain how consuming their preferred drug along with, or instead of, prescribed pain medication helps them cope with the pain (see also Consumption in everyday life). This consumption is often combined with other strategies for looking after their health and well-being (see also Looking after health & well-being). Accessing adequate pain relief is difficult for a few people due to their history of addiction.

Several talk about having hepatitis B or C (viruses that can cause inflammation or stiffening of the liver). Some say they acquired hepatitis B or C as a result of sharing drug-injecting equipment, while others don’t know how they acquired the virus. The diagnosis has led some to change their drug use. They describe their experiences of treatment and stress the importance of access to sterile injecting equipment.

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Health conditions

Our participants talk about living with a range of health conditions, including liver damage, seizures, lung conditions and diabetes. While some see their condition as related to their consumption, others don’t. Scarlett (F, 29, works in finance, ice), for example, says there is ‘a history of high blood pressure’ in her family, but she thinks that taking ice contributes to her blood pressure being ‘incredibly high’. Ben (M, 29, works in hospitality, alcohol) says his liver condition is connected to his alcohol consumption:

The biggest shock was some of the results I got back from my liver function [test], which at one point were very scary. That was before I went into rehab the first time. That was close to alcoholic’s hepatitis, or the next stage after that’s almost cirrhosis of the liver. So that put a scare into me and I just started treating myself well again.

As with Ben, being diagnosed with an illness or health condition has led some to cut down, stop or otherwise change their patterns of consumption (see also Changing patterns of consumption).

Conditions affecting the lungs are a concern for several participants, with some saying that smoking cannabis or cigarettes can make an existing condition worse. Ned (M, 49, not working due to illness, heroin) for example says, ‘I’m asthmatic. That’s the main reason that I have to give up pot [cannabis]. I can’t smoke it any more. I get to the point where I can’t breathe because of my asthma’. Misja (M, 40, not working due to illness, cannabis and heroin) is similarly concerned that smoking cannabis makes his emphysema (a chronic lung condition) and asthma (a chronic inflammatory disease of the airways) worse:

I’ve been diagnosed with emphysema and asthma; I’ve really got to stop [smoking] again. My stepfather died […] from emphysema […] and I don’t want to go down that same track. I get really short-breathed when I walk uphill or walk up stairs.

While some express concern that their consumption could make an existing condition worse, one participant, Josie, finds that taking heroin helps her to cope with the pain she experiences from her chronic lung condition.

Josie (F, 38, not working due to illness, heroin) says taking heroin helped her cope with a painful lung condition and post-traumatic stress disorder.

[Heroin] did take some pain away, physically and mentally […] I was sick all the time as a teenager and I got diagnosed with a lung disease, and they couldn’t fix it but we could maintain it […] I was tired all the time and getting a lot of chest infections and, yeah, just being really lethargic […] I was finding it hard to breathe, like, really short of breath and my lips were going a bit blue and that’s when […] one of the girls [I was living with] said to me, ‘You’re not well, you look terrible’. So that’s the reason originally why I went to the doctor […] But yeah, being that age and being diagnosed with lung disease and post-traumatic stress didn’t help the situation […but] I could have a taste [of heroin and] I could feel good for a while […It causes me pain in] my ribs, because I cough all the time and I have to sit up, more or less, to sleep now, because I can’t lie flat. I just can’t breathe […] My doctor is saying just to be careful, because [heroin] can slow your breathing right down and stuff like that. So, I have to be mindful of it.

After being hospitalised for conditions they say may have been related to their consumption, a few say they suffered complications in surgery or when undergoing other treatment. They attribute these complications to rapid withdrawal from alcohol or another drug.

Luke (M, 44, works in retail, alcohol) underwent surgery for a perforated stomach ulcer that may have been related to his heavy drinking. He says his ‘body shut down’ during surgery.

I had an ulcer that perforated and then I was in hospital […] Because I’d been drinking so much, when they did the operation my whole body shut down. So my lungs collapsed, got pneumonia, stopped breathing. So then they had to put me in an induced coma for three weeks […] and then in hospital for about three months. Had to learn how to walk again […After being discharged from hospital] I was staying […] at my dad’s place. I was pretty much in bed or on the couch for about another three or four months, so I was doing nothing. Just eating, trying to put weight on, because I’d lost about 16 kilos or something.

For those who have a health condition not directly related to their consumption, a few say they accessed treatment for their condition through the alcohol and other drug treatment system (see also Residential treatment).

Dylan (M, 27, unemployed, cannabis) says he stopped taking insulin for diabetes for a while but resumed when he went to residential treatment.

I’m a diabetic, been a diabetic since I was 17. Yeah, I stopped my insulin—because I’m insulin dependent—stopped my insulin, started drinking heavy, smoking heavy, sort of didn’t care about the world or myself. Locked myself away from everyone and didn’t care. And then I got a drug and alcohol worker [at a local community health service] and they mentioned about rehab. And I sat on that for about a month or two thinking about it and yeah, I volunteered myself to go into rehab […] Then I got into rehab, I met a diabetic specialist and […I’ve] got that back under control now. I have my insulin every day. Yeah, like I said, it gives me a bit of energy and I feel a lot better. I’m not tired or sleepy, you know. I can get up and come in to town and I can do stuff, you know […] I, sort of, don’t want to be young and die from diabetes, but that’s life. But I just take it day by day at the moment.

Renee (F, 35, works in hospitality, ice) says she was diagnosed with angina and hepatitis C when she went into residential treatment, and began taking medication for her heart condition.

I have [to take medication to lower my] cholesterol, and aspirins because […] I’ve got an enlarged heart and when I went to the specialist here [in residential treatment] she said I suffer with angina […] Next week I’ve got an appointment [to discuss treatment options] for my heart and for the hep C thing, so I’m really nervous about them both really. But here [in residential treatment] they get onto everything so quick. They’re really good like that, you know. Instead of waiting for weeks on end, you’re in pretty quick. Like, so it’s really, really good in that respect […] I’m really, really appreciative that they’ve done it so quick.

A few people interviewed have been diagnosed with HIV (a virus that weakens the immune system). In Australia, rates of HIV transmission are low. Where it does occur, it’s most commonly sexually transmitted, and is sometimes acquired through sharing injecting equipment. Those interviewed who have HIV don’t specify how they acquired it, but explain how it’s affected their consumption. Some manage their consumption to allow extra time to recover. As Jason (M, 34, studying, ice) explains:

Knowing that my immune system is compromised […and] also protecting all my partners by […having] PrEP (pre-exposure prophylaxis, antiretroviral medications) and PEP (post-exposure prophylaxis) […I try] not to play as often as I’d like. Having [ice only on…] a special occasion, so that my body has time to recover and to get T cells back up to normal, or sort of normal levels, let my brain get back to normal chemical-wise.

Others, such as Zac (M, 53, works in health services, party drugs) below, find that their drug use has increased since their diagnosis.

After being diagnosed with HIV, Zac (M, 53, works in health services, party drugs) found support from other HIV-positive men who took ice, and began taking it more often. (Played by an actor)

I’d used [crystal] before [I was diagnosed with HIV…but there’s a lot of use] among HIV-positive guys […] and I did become involved in that to some extent […] What happens is, once you become positive you suddenly find yourself part of that group […] and [using together] is a little bit of a support mechanism. You’re meeting other guys who’re positive, you’re having sex with them, and you’re sometimes creating friendships with them […] I’m not saying it’s necessarily a healthy way to [cope] but it becomes a little bit of a support mechanism.

Chronic pain

Chronic pain as a result of an injury is a concern for several people interviewed. Some say they manage the pain by consuming their preferred drug, and others explain how they combine their consumption with other strategies to look after their health and well-being (see also Looking after health & well-being). Having a medical history of drug dependence has made accessing adequate pain relief difficult for some.

Consumption for pain management

Several say they manage chronic pain by consuming alcohol or another drug (see also Consumption in everyday life).

After breaking his back, Phoenix (M, 48, works in the media, alcohol and prescription painkillers) drank alcohol to manage pain before switching to prescribed pain medication.

Part 1

I had a motorbike accident […] broke my back, wrecked my bike, lost my job. So, of course, I was self-medicating […] once I had gotten out of the rehabilitation-type system where they help you cope with your injuries and drug you up, and stuff. At that point I wasn’t doing a lot of prescription opiates, I was preferring the alcohol. Drunk essentially 24 hours a day, seven days a week.

Part 2

I found that my pain levels were huge. I went off and saw a doctor a bit closer to the coast, just looking for a doctor to get my opiates and stuff off. At that point, didn’t really care who it was, so went off and saw this one doctor who said to me, ‘You’ve clearly got pain. You’ve got this deformity’.

Part 3

[My use of pain medication now is] fairly constant. The patches are a weekly thing, I change that once every 7 days […] Buprenorphine, Norspan is the brand. They have given me a certain amount of stability that I never had before […] I wake up pre-medicated […] The only thing I’ve got these days, and it’s starting to get the point where I need to go up another notch with this, is the breakthrough pain […The buprenorphine helps] but it’s not perfect […] I’d wake up before and I’d grab a handful of pills, throw them down my throat and chase it with whatever was floating about, whether it was vodka, beer, rum, whatever was there, and that would be the start of my day. I found once that I was given these patches and they had time to get into me on an even sort of basis, I wake up and am able to get out and do things before I need to medicate, which was a completely new experience.

Callum (M, 36, studying, cannabis) chose cannabis over prescription pain medication to alleviate his chronic back pain. (Note: strong language)

[In terms of my day-to-day experience of smoking cannabis] pretty much I don’t smoke it in the mornings. I wake up, I wait till the afternoon, do what I need for the day. Yeah, when I feel the need to relax, when my day’s done, I smoke a bit of weed. It helps me unwind. Also when I get to bed at night, due to the fact that I have a crushed T12 vertebra, I find that if I don’t smoke, I just have problems getting comfortable in bed, but if I do smoke, there’s no problems, I’m a basic, normal, functioning human being. Due to my back, when I actually broke it [the doctors were] like, ‘You’ll never work, you’ll never walk properly again. Here’s opiate medication. Take that home’. There was no guidance, there was no nothing, and pardon my French, but I got out of hospital and said, ‘Fuck that, I’m a human being. I have rights. I want to live my life. I want to be the best person I can and still be a human basically, and I’m not going to shut myself off’. So I threw out the medication, and just continued to smoke weed through my whole recovery, and I believe it’s helped me be a more functional human being.

Accessing pain medication

Several people say they have difficulty accessing opioid pain medication, such as codeine, morphine or oxycodone, because of their medical history of drug dependence. As George (M, 58, not working due to illness, alcohol), for example, explains:

Once I was hospitalised […] and I’d actually been attacked and had fractured my back and they sent me out of the hospital with Panadeine. I couldn’t even get [Panadeine] Forte (paracetamol and codeine) because they knew I had a past history of drug use. So, they wouldn’t give me anything stronger than Panadeine. I mean it’s ridiculous, I had a fractured back.

This lack of access to adequate pain relief is a significant concern for some. Several say it’s led them to consume alcohol or other drugs in order to manage their pain, and others say they felt they had no option but to consult different doctors until they found one willing to prescribe adequate pain medication.

Bobby (M, 49, not working due to illness, heroin and alcohol) had surgery for accident-related injuries and says he wasn’t given adequate pain relief.

I tried to fix the roof and the next thing I know I’m gone [fell off]. And they’re pressing bones in left, right and centre in the hospital, and not using many painkillers, because they knew [I had been on] methadone [in the past] and so they didn’t want to get me re-hooked [on opioids…] So they were really stingy with the painkillers, and you can’t imagine how much it hurts if somebody is pushing in bones left, right, and centre. And I don’t know what they used, because you can’t do anything […] you’re paralysed […] The first thing I did [after leaving hospital was go back] on the methadone […] I’ve got nerve pain now but [methadone] doesn’t help for nerve pain, and nothing works drug-wise. Heroin still works […] but it’s not like they’re going to make exception for me and prescribe heroin in pill form […If I could, I would take] diamorphine (heroin) […] purely for the pain. I reckon it would be much better […The pain clinic] only see me once in a blue moon. They put me on […] Lyrica (pregabalin, medication for nerve pain or epilepsy) and I’ve been taking that [but I get…] side effects with bright lights and everything shining […The doctor at the pain clinic] said, ‘I’m not supposed to prescribe you any opiate-related [medication’…] But it would help me a lot, just once in a blue moon, to have the pain relief.

Nadia (F, 32, not working due to injury, prescription painkillers) says she found it hard to access adequate pain medication for her back injury because of her ‘history of addiction’.

[I have] two prolapsed discs in my back. One of them is ruptured and it causes […] my posture to be quite out of kilter, and my spine sort of sags over to the side, which means it presses on all the nerves […] Doctors can’t do anything for it […After my first injury] I was just in agony, my eyes were red with pain, and I could not function like that […] When I went to see my doctor […] I said, ‘Look, I just need something to relax my muscles, I need something’. He said, ‘The only thing that’s going to do that is Valium (diazepam) [and] I can’t give you Valium because you’ve got a past history of addiction. You can’t have that. What I can give you is Panadeine Forte for the pain’ […] But when my doctor gave me Panadeine Forte, it blew my stomach up because I’m allergic to it […] and that caused more pressure, more pain […] My back was stuck on an angle like that for months and months […until] I made an appointment to see this other doctor who was what I would term a dodgy doctor […] but you know what? He listened to me, and he gave me Valium and Endone (oxycodone) and […] it’s really helped me so much […] I have to be made to feel like a doctor shopper, and go to one particular doctor to get my medication, and then I go to another doctor if I’m actually sick. He’s a very good doctor, but he will not prescribe me something that I need.

Hepatitis B & C

Several people interviewed have been diagnosed with hepatitis B or C. While some aren’t sure how they acquired the virus, others attribute it to having shared injecting equipment. Those who practise injecting say they avoid sharing or reusing injecting equipment. However, they note it’s not always possible to access sterile injecting equipment, particularly when needle and syringe programs (NSPs) are closed or far from home, or while they’re serving a custodial sentence where NSP is not available (see also Contact with the criminal justice system). Harry (M, 52, works in the arts, heroin), for example, says:

I had [hepatitis] B. I would never allow someone to use something I’d used: spoon, fit or anything […] I don’t care what anyone tells you, just because there are needle and syringe programs doesn’t mean people don’t reuse needles. Of course they do. Can’t always get out [to an NSP], it’s shut on the weekend, whatever. It’s one of the problems. [Having them] available in every chemist would be a smarter idea.

Undertaking treatment for hepatitis B or C is an important consideration for many of those diagnosed. While new (interferon-free) hepatitis C treatments became available in Australia in 2016, most participants discuss earlier treatments that were less effective and produced more negative side effects. Some of those considering treatment say they had been discouraged by the interferon side effects, or that some doctors had required them to stop consuming alcohol and other drugs before beginning treatment.

A few were not considering treatment at the time of the interview as they didn’t have any symptoms. A few say they cleared the virus without medical treatment, as Rachel (F, 50, works in the health sector, heroin) explains, ‘I got hep C off my partner […but] when I was pregnant I cleared it.’

Peter (M, 41, unemployed, heroin) says he acquired hepatitis C from sharing injecting equipment and wants to begin treatment.* (Note: strong language)

* Since the interview, new hepatitis C treatments have become available in Australia on the Pharmaceutical Benefits Scheme (PBS).

Part 1

I have the hepatitis C due to [heroin] use. I’ve been busting to try and start the interferon treatment but the doctor I saw recently is trying to talk me out of it. He’s saying, ‘They’re doing trials in America at the moment for the new drug or the tablet and by the time it gets to Australia and passes the PBS [Pharmaceutical Benefits Scheme], it could be a long time’.* But he’s still trying to put me off, and I said to him, I said, ‘Look, I’d like to start this as soon as I can’ […] They say that mentally and physically it can really knock you about […] You know, your dry nails to skin to teeth, to all sorts of things. I don’t care, you know, if it leads to a longer life, of course.

Part 2

I think [I was diagnosed] six to eight years ago, I’m not too sure. It didn’t shock me or anything. It was just no surprise really, I sort of knew. I sort of knew there may have been a fucking couple of other occasions where I fucked up and shared a spoon or whatnot, and there was a couple of times where I was given a needle fully loaded, told it was clean too.

Harry (M, 52, works in the arts, heroin) acquired hepatitis B through sharing injecting equipment and later went on a treatment trial.

Part 1

I fell in with a great group of people that just so happened to use lots of drugs, and so I was introduced to a series of different drugs, and enjoyed the lot of them. I thought drugs were fun, and it didn’t hinder my work, it didn’t cramp my lifestyle, apart from getting ill. And that happened I think about 1981 or ’82 and I contracted hepatitis B, and that was because we were sharing needles, and that is because back then there was no NSPs [needle and syringe programs]. And so […] getting hold of needles was really difficult. Like, you go around to the guy’s place, a bunch of you would go around to a friend’s place, because he was the only guy who had a fit and you’d all use it.

Part 2

When I was chronic active B, when I was diagnosed as that and I went […] on one of the first interferon trials and I was given […] the hugest dose of all of them in that trial […] and I was seriously ill for six months, like really ill. [They said] ‘You might feel, like, flu-like symptoms.’ And again, ironically, I was on this trial, it was all very important, you were going in there having blood tests, wee tests, everything, and it was important. And it was a way to get rid of this chronic active thing. And so I put my hand up for it and they said, ‘Right, you’re going to feel flu-like symptoms,’ and you did and it wasn’t good. You were seriously ill […It] just was constant […] So to not affect the drug I was asked to take paracetamol, just paracetamol, that was it […] and it barely took the edge off, until I found that heroin was the best thing to remove the symptoms […] It just seemed ironic to me, and I probably would’ve been using speed a lot more then, but I was using heroin because it just made the interferon feel better.

Grace (F, 58, works in manufacturing, heroin) found it difficult to stop drinking so that she could begin interferon-based hepatitis C treatment.* (Played by an actor)

*Since the interview, new interferon-free hepatitis C treatments have become available in Australia on the Pharmaceutical Benefits Scheme (PBS). The new treatments are more effective and have fewer side effects than the older interferon-based treatments.

[I was diagnosed with hepatitis C more than 10 years ago…] I know it’s been there for a long time, yeah. And I did go and see someone at the hospital here about it but he said, ‘Well, you’re going to have to stop drinking before we start [interferon treatment]’ and I did. I got quite good for a while. That’s when I went to that rehab joint […But the drinking] just kept sneaking up again and I’ve just never done anything more about it […] Apparently [interferon is] not supposed to be a very pleasant treatment […] I heard a few horror stories from friends of friends who’ve done it, felt like they were sick for a year. I think that put me off a little bit too […] I’m just having a hard time stopping drinking at the moment, but if I ever do, I could go back and see [the doctor].*

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