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Holistic health & HIV

People find different ways of keeping healthy. Because anti-HIV drugs really work, some people did not need to look too far beyond medical treatment. As one man said 'Good doctors and the YMCA' were all he needed. Others believed in a more 'whole person approach' to health. Taking such a 'holistic' approach means that you focus on body, mind and spirit when you think of improving your health. You may for example try to improve your fitness, lifestyle, emotional wellbeing and spiritual wellbeing. The people we spoke to who took a holistic approach were not against anti-HIV medication. Instead, they talked of things like balance, moderation and harmony in their lives.

 

Says there is no need to rubbish either the medical or alternative approaches to health.

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Says there is no need to rubbish either the medical or alternative approaches to health.

Age at interview: 37
Sex: Male
Age at diagnosis: 24
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It was interesting because all through the Nineties there was the theory that you know Western medicine actually is bad it is just poisoning' AZT is terrible. And they were right about AZT, but those people had very much' had that, it was that crossover between scepticism and denial where in saying that this is bad, they have to then, they felt the need then to rubbish everything that the medical establishment was doing. I didn't believe that. I couldn't believe that. I didn't want to believe that. I needed to be able to trust in my doctor and the fact that I was always treated with respect and given my opinions and allowed to do what I needed to do for myself. It was proof to me that actually the doctor was a good person. 

When then I actually took a combination therapy and it was working, I thought okay well there you go that is fine, but that doesn't mean that I have to then rubbish any of the alternative therapies, why not both of them. And the herbalist friend I had was very much about you know these are complementary therapies, these can work in their own right, but I don't want you to come off any medication, that medication is getting rid of your HIV. This won't. But what it will do is boost your immune system.

He was giving it to people who weren't on combination therapy and he was giving it to people who were. Now with the studies that he did at the time seemed to show that it worked for everybody and it did make a big difference. So I stuck with the combination therapy and I took the complementary therapies as well, and I started to get better.

 

He believes his holistic approach to his health kept him well.

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He believes his holistic approach to his health kept him well.

Age at interview: 39
Sex: Male
Age at diagnosis: 28
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I had done everything that I could possibly do to keep myself well. So much so, even though my T cells were only 30, I never became ill.

My doctors could not understand. It's like, 'I don't know what you are doing. But whatever you are doing, it's working for you.' And I would, take my vitamins, I would go to the gym, eat well, surround myself with good things. Apart from, the horrible phase with [name removed]. I have acupuncture, homeopathy, you name it. Meditating, doing yoga, buy myself fresh flowers. Treating myself. Not as, 'Today is going to be my last day.' But simply surround yourself with beautiful things, and life can be beautiful.

Surround yourself with misery, allow the misery to take place, and you are in big shit.

People found all sorts of ways which they believed  improved their wellbeing including relaxation exercises, meditation, yoga, hypnotherapy, reiki, massage: 'When you are stressed out, when you are depressed, a good massage with some oils can give you a new lease on life,' said one man. 'Acupuncture released and calmed me down… Homeopathy on a regular basis made me feel less anxious,' said another man.

 

Used a visualisation to picture destroying the HIV virus in his body and felt more in control.

Used a visualisation to picture destroying the HIV virus in his body and felt more in control.

Age at interview: 49
Sex: Male
Age at diagnosis: 28
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And also during the AIDS mastery course there was' I held this pink quartz and they started to say' there were like facilitators in the group and they started to say things like 'What we want you to do now is relax, close your eyes', we had cushions and pillows all around us, and it was like visualise that you are walking nice and slowly, taking your first step, you know you can hear rippling brooks, and it was like relaxation things. And then one particular facilitator started to change it, and say, 'Right, now you're in a relaxed position, what I would like you to do is think about the virus, have a look at it, do we all know what it looks like.' Well he didn't say do we all know what it looks like, we know what it looks like, because we did that as part of our weekend. So we looked at this virus, and we started to look at it. 'I want you to get angry with it.' So we are all knocking seven bells of crap out of the pillows. It was quite funny really, it was like we were all going bloody mental. But saying that it was one of those things that actually, it really brought out a lot of baggage about the virus because we had visualised it, we hated it, we destroyed it. We weren't cured of it, we knew that at the end of the course. You have still got the virus, but you are more in control with that virus. That virus is not controlling you.
 
 

Described a meditation technique that could alleviate the pain from peripheral neuropathy.

Described a meditation technique that could alleviate the pain from peripheral neuropathy.

Age at interview: 57
Sex: Male
Age at diagnosis: 39
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It's an old Buddhist breathing thing that basically I use it through abdominal breathing where you think in terms of a square. And the idea is that you breathe in to the count of four, so extending the abdomen, and then you do nothing for the count of four, then you breathe out for a count of four, and do nothing for a count of four. And how long that four is, it really doesn't matter. It's depending on you. Sometimes it's quite nice to do it to a metronome or to a ticking clock. So that can be quite irritating sometimes. And you actually' it sounds the easiest thing in the world, to go in do nothing, breathe out, do nothing. But you get distracted. And if you can actually keep going back to that pattern, and when you're secure in it, actually hone in, mentally, into where it hurts. There's no point in saying your leg hurts, sorry that's not good enough. Which bit of your leg hurts? Top bit, bottom bit, side bit? OK you've got that far. OK, well let's actually get it down to within two inches. OK we've isolated that, now move into one inch, now move into half an inch. And now you get into the centre of it, find which follicle is hurting. And the extraordinary thing is if you can get through that process the pain suddenly vanishes. And believe you me it actually happens.

Some people found herbal and homeopathic treatments helped them to feel better. People we talked to were aware that while there may not always be scientific research that such approaches work against HIV, unconventional approaches helped alongside their medical care. For instance, one man believed treatment with Maitake Mushroom along with anti-HIV drugs and chemotherapy really helped his immune system to improve: 'It wasn't just the combination therapy, it [T cell count] was increasing exponentially and I credited the Maitake with that.'

Some herbs and vitamins (e.g. large doses of Vitamin C, garlic, St John's Wort) can interfere with anti-HIV drugs and other medication, so you should ask your doctors before using them.

Complementary approaches were thought to help in  many ways including reducing stress, reducing some side effects, supporting the immune system and providing pain relief. With this in mind even sceptics could get benefits from alternative approaches. One man said, 'I think that reiki's very bumph [suspect] to be honest. But it's just good to be able to have an hour where you have nothing else to think about!'

 

Although sceptical he did feel better after hypnotherapy.

Although sceptical he did feel better after hypnotherapy.

Age at interview: 52
Sex: Male
Age at diagnosis: 44
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I'm a bit of a cynic when it comes to these sorts of things. I did go' went through the Terrence Higgins Trust, they put me in touch with a chap who was a hypnotherapist and I went thinking to myself this is going to be a waste of time. But actually, although I didn't get very deeply under any sort of hypnosis, it was a bit like sitting there listening to a man telling me a story rather than actually a feeling of floating away and believing it. But all the same, I came out of it sceptical thinking well that was a waste of time. But within a few days I was feeling a bit better. So I have to admit grudgingly that it probably did me some good.

The people we spoke to were aware that there was no scientific evidence that complementary approaches like herbs and spiritual healing could cure HIV. One African woman said, 'Traditional herbalists in my country… say they cure HIV. But whether that is true or not, that needs to be seen.' African individuals were also aware that HIV could be blamed on things like witchcraft. However people we talked to were sceptical about witchcraft being either a cause or a potential cure for HIV.

Alternative approaches to health can be expensive - one man said he spent £500 per week on alternative care when he was very unwell. However some HIV organisations can arrange access to cheap complementary therapies. And even simple everyday things like having a candle lit bath with aromatherapy oils in the water were thought to promote wellbeing. One man believed that small amethyst stones that you get cheaply from health shops were good for mental health problems: 'I think they allow you to cry,' he said.

People also described the benefits from everyday things such as gardening and caring for pets' 'I see my little garden and I get pleasure out of it,' said one man. 'It's nice to come home to someone or something, and my cat is there,' said another man. 'If I've been really busy I'll need to spend a good portion of the next day resting… If I'm resting on the bed, I just leave the door open and I'll have a pile of purring pussies on me,' said another man.

Many people said it was important not to under-estimate the power of eating well, taking exercise and getting enough sleep: 'Be very in tune with your body and really listen to it… to the reactions not only to treatment, but what you eat, what you drink, how much you sleep… and to stress.'

 

Had much more energy and better concentration after improving her diet and exercising. (Read by...

Had much more energy and better concentration after improving her diet and exercising. (Read by...

Age at interview: 33
Sex: Female
Age at diagnosis: 27
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I felt much stronger, like I said. I couldn't… before then if I go out I would be so tired I would just have to come back home or have to you know… but now I can go out all day and just you know… I'll go into shops and I walk around, walk around for hours and I will, and I don't feel tired. I've got more energy, yeah. 

And I've got more energy to take my son out to the park and run around with him and I just don't feel as tired as I used to. I really used to feel tired. 

And it even just to go to the support groups then used to be such a big job cos I used to feel just so drained, so tired and all I wanted to do was sit down. I couldn't stand up for a long time, yeah. I did feel quite… And then the dizziness and the headaches as well. 

I think going to the gym has helped with the headaches and it helps to clear my head as well, clear my mind. And then also my concentration is quite poor cos of the medication, that was before I started taking… going to the gym. But since I've been going to the gym, I still get that… and I notice that happens more when I'm tired, but when I've gone to the gym regularly for that week or whatever it helps me, I can think straight.

Those who had been physically ill found it particularly helpful to do physical exercise to regain their strength: 'I spent the whole of the summer going to the YMCA, to different programmes, investing in myself, getting myself physically fit again.' People did things like walking, jogging, yoga, Pilates or gym to build strength and aerobic exercise to improve the heart and circulation system.

 

Doing aerobic exercise helped to reduce his cholesterol and minimise lipodystrophy.

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Doing aerobic exercise helped to reduce his cholesterol and minimise lipodystrophy.

Age at interview: 37
Sex: Male
Age at diagnosis: 24
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I was already starting to lose weight in my face' I never had any fatty deposits anywhere else, but I accredited that to the exercise I was doing' 

But is only going to do you good anyway, it is interesting last year my lipid levels had been quite high because of the combination therapies, the fat levels. And my levels have been around 5.8, the cholesterol levels which is borderline high. Over six and it is medication time to try and get those down. Now the one area I don't like in terms of exercise is cardiovascular exercise, which is very good in terms of keeping your heart healthy keeping your blood at good levels in terms of the cholesterol, it tends to cleanse through a little bit more and so on. 

But it is the one thing I don't like doing. I find it very boring, but last year having got to the point of qualified to personal trainer, I started to recognise actually it is one of the best things that you need to do for yourself. So last year finally I decided to get myself to a programme of regular exercise on an aerobic capacity. So I trained three times a week and over the period of from April to September, I did three times a week, and I worked out and I trained and I jogged, I rode I did all of the things that I could. My lipid levels had always been about 5.8 up until then, when I have my results in September it was 3.2. 

Which is fantastic, and it proved to me that actually it was the only thing I changed last year. So for me that was proof enough that it had worked.

Gym membership was too expensive for some but others pointed out that exercise programs for people with HIV could be affordable. One man volunteered for a YMCA exercise program and received free training to become a personal trainer. Exercise could also be done at home. Some people thought that exercise helped to strengthen the mind, detoxify the body from the effects of medication, reduce side effects and fight HIV.

 

He was referred to a physical exercise program involving Pilates that helped him regain strength...

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He was referred to a physical exercise program involving Pilates that helped him regain strength...

Age at interview: 37
Sex: Male
Age at diagnosis: 24
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I got another referral in 1997 for a programme called the Positive Health Scheme and it was a clinical referral programme for people with HIV. And so I went along there. Now at that point I had obviously I had KS for several years in my lungs, walking was just a real chore, it was very difficult to walk at any length. I was breathless very easily because my lung capacity was massively reduced and I was very weak after the pneumonia and all of the rest of the things. And it was you know' I was in a bad way. So I went and did this programme and they started to try and get me to exercise a little bit, and they got me to do Pilates which was great for me at the time because it was on the floor I didn't need to be standing and running around or doing anything. It was very mind-body orientated as well, that of the great thing for me. 

Given the fact that I am a great thinker a lot of the time, I spend a lot of time analysing and thinking over things... the fact that actually of having an exercise which was about focusing your attention on the areas that you were working on and really working with the mind and the body I really liked, and it is what got me back on my feet physically' and for the first time I was inspired by exercise! I was one of those kids that avoided sports at all costs. Pilates really worked for me it was one of those things, no this makes sense to me. I can think my way through this exercise.

For gay men who were not sporty in their youth, doing exercise could help to build up muscle and increase their comfort with their bodies: 'I feel like I inhabit my body in a way I never did before…,' said one man. However, for African women, exercise and good diet resulting in weight loss sometimes attracted negative comments: 'People would see me and say "oh you've been sick" or "you should stay big",' said one woman. Some African men with HIV had to overcome their fear of exercise.

 

He worried about doing any sport. (Read by an actor.)

He worried about doing any sport. (Read by an actor.)

Age at interview: 32
Sex: Male
Age at diagnosis: 27
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Before I didn't want to do sport and everything because I was saying to myself if I get injured or… Yes, I worry about doing too much sport and something happened. But then after I went to the other PCT, what's his name? Primary Care Trust, so they advised me and then I went to a gym and things like that. And I said that I can't do it! I can't run, even five mile, you know, easy. At first I couldn't, I didn't think I could. And you, you don't even want to try, because it's like, oh that's it, that's it. So I wait until my time is up... 

But then now I, [laughter] I have, I'm not thinking about giving in, I am thinking about fighting it. And any way I can. Mentally. Physically. I even ignore it now, I forgot about it, and I go on with my life. I take every day like… sometimes I tell myself, there's a accident, people die. Even still I'm alive. Some die from accident, why should I put myself in all those positions, I should get up and do something for myself.

Some people need to think about when to eat because of their medication. Some medications can make it hard to keep food down at times. One man said he got a 'metallic' taste from his medication and suddenly developed 'funny food dislikes.' Many people changed their diets to include more fresh fruit and vegetables and home cooking: 'I want to be helping my body fight HIV… I always make my own food and I enjoy the process,' said one man. People also tried to reduce animal fats in their diet because one side effect of some anti-HIV drugs is increased cholesterol.

Some people could not afford to eat well or get the ingredients they needed for their traditional food: 'I miss my food badly,' said one African woman. One man hoped that doing exercise would mean that he did not have to worry about diet: 'I don't follow a nutrition programme myself. I know that fats are my enemy but if I am going to the gym I can only hope that they are cancelling each other out.' Some people noticed that they needed to improve their eating habits: 'When I am happy I eat, When I'm upset I eat.'

Last reviewed May 2017.

Last updated September 2010.

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