All posts by james

My journey with HIV started with chaos. Now I’m in control of my health, I’m on steadier ground

HIV shook up my entire world. But it wasn’t just HIV. My health, my personal life, and even my identity was in crisis. Recognising my individuality, seeking support and planning for the journey ahead gave me the control and stability I so badly needed. My name is Darren. I’m a 52-year-old father of four from Salford, and this is my HIV story.

When I was diagnosed, HIV seemed the least of my problems. I was trying to cope with chronic fatigue syndrome and mental health issues. As my health began to deteriorate, so did the communication holding my marriage together. Eventually, I had a complete breakdown which led me to question everything, including my sexuality. As a straight man until that point, I found myself in a totally new world. Defining my new sexuality in the same way as others was impossible and I felt isolated. It was the toughest time of my life.

I fell into a vicious cycle, using sex as an escape. Shortly before my HIV diagnosis, I was living with a couple in an open relationship and slept with them both. One of them started to become very ill and was soon diagnosed with HIV. It wasn’t long before I was diagnosed too.

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You don’t have to be a doctor to know that chronic fatigue syndrome, mental health and HIV isn’t a good combination. I was already aware of my local HIV support group, George House Trust, as I had been introduced to them when I was diagnosed. I realised I couldn’t carry on living this way, and returned to them to seek help.

This was one of the most important steps I took. I started receiving counselling and began to accept what was happening in my life.

The biggest lesson I learnt is that if I didn’t deal with my health, no one else would. I remembered the man who gave me HIV, and how scared his partner was to confront it. He had locked information leaflets and medical books in a cupboard where they would sit unread. That wasn’t going to be me.

The more I started to learn about my health and my future journey with HIV, the more I felt in control and the better I started to feel. I found out that certain HIV treatments affect your body in different ways, so I spoke to my doctor about my concerns. I also realised that planning ahead for HIV meant having a healthier lifestyle too.

I now work alongside George House Trust, supporting people living with HIV. I am all too aware that I have been fortunate enough not to suffer the stigma and abuse many others in the gay community have. I also want to help people who find themselves in difficult circumstances as I did after my marriage ended.

People with HIV still need to be heard. They need to speak to their doctor about their future with HIV, and speak up about their individual situation and what their health challenges might be. Having a positive vision of the future is not always easy, but once you start to work through your worries and plan ahead, all your problems seem a lot more manageable.

Growing old with HIV: getting to the bones of it!

Time and again, I go to lectures and hear ‘the population is ageing,’ alongside a sophisticated diagram with a negative looking facial expression… as if this is a problem! With or without HIV, we are all living longer which is GREAT. However, we all need to approach getting older positively. Thanks to huge innovation in HIV treatment, we can manage the virus into older age. This is amazing but is breaking new ground – greying hair, dropping waistlines, wrinkles and HIV – who would have thought it!?

This development brings new challenges, one of which is thinking about your bone health.

How bones work

There are 206 bones in an adult skeleton, working together so that you can move fast whilst providing protection for your organs. The skeleton is so well-designed that it is light enough for Usain Bolt to run 100 metres in less than 10 seconds, and strong enough for Lewis Hamilton to crash his F1 racing car at 150mph and walk away. The point at which we get the strongest and most resilient bones we will ever have is called ‘peak bone mass’. Our peak bone mass and strength is reached at around 25 years old which is maintained for roughly another ten years. After this point our bone strength, like muscle strength, tends to slowly and steadily decline (although the more we use them, the longer we keep them strong).

If bones get really thin, this can lead to osteoporosis, which means that they are weaker and can fracture more easily. Bone fractures are painful, cause disability and can significantly limit independence.

What does HIV do to bones?

Stock image posed by a model.

We don’t quite know exactly what HIV does to our bones. The virus seems to slow down the cells that make healthy bone.1 Additionally, in the period between infection and starting treatment, HIV excites the immune system to produce bad chemicals (called cytokines).1 This doesn’t do healthy bone development any favours.

HIV drugs and bones

Starting treatment with most antiretroviral drugs appears to temporarily reduce bone strength as measured by bone mineral density (BMD), using a DEXA scan. Typically, antiretrovirals reduce BMD by 2-6% over the first 1-2 years.2 The good news is that 2-6% is not very much, especially if the skeleton was healthy before getting HIV. Most people’s skeletons will stabilise this loss after 1-2 years. If you’re concerned that your bone health wasn’t the best before you started treatment, or you’re concerned about your BMD, the best thing to do is talk to your doctor, work on your diet, exercise and avoid smoking and heavy drinking to help your skeleton recover. It’s also important to know that some antiretrovirals may be slightly worse for your bones than others, whilst some newer drugs may be better for bone health. Please discuss your treatment with your doctor if you have any concerns, particularly if:

  • you fall over often
  • you have ever broken a bone without much trauma as an adult
  • people in your family have osteoporosis
  • your mother or father broke their hip

Finally…

Your skeleton is amazing! The best things you can do for it are looking after it with diet and weight-bearing exercise. You should also ask your doctor for your FRAX score or a bone density test, especially if you fall over or break a bone.

If you’re concerned about any aspect of ageing with HIV, head over to plan ahead for more information.

Dr Walker-Bone is an Associate Professor of Occupational Rheumatology at the University of Southampton’s medical school.

Growing old with HIV: how to cope with ageing and those grey hairs you never thought you would have!

Time is the great equaliser. We are all subject to it whomever you are; however popular, talented, toned or gorgeous – whether you are HIV-positive or not. Ageing is a natural process and we have no choice but to accept it, no matter how many grey hairs we dye. How we choose to deal with it is the key.

HIV has seen changes of its own, namely that huge innovation in treatment means we can manage the virus into our older age, moving into unchartered territory. Experts are also predicting that many on treatment will live long and healthy lives.1 This is amazing, but it comes with new challenges to our physical health, emotional wellbeing and future happiness.

It is also well-documented that living with a long-term health condition can cause issues such as stigma, anxiety and depression2, which can be amplified alongside typical issues that come with ageing such as loneliness, independence when it comes to caring for yourself and isolation. Plus, no matter whether you’re a veteran or just setting sail on your HIV journey, your HIV diagnosis can throw you off course, leaving you feeling at sea without a compass. All in all, this isn’t a list of things to be thrilled about.

“…your HIV diagnosis can throw you off course, leaving you feeling at sea without a compass.”

But never fear, some guidance is here! Here are six tips that could help maintain and improve your emotional health when ageing with HIV. Whether you’re a spring chicken or a silver fox, getting started now is best, as I believe it’s the seeds we plant today that we harvest in the future as we get older.

• Be kind to yourself

Article author Paul Thorn

By this, I mean your ‘self-care’. Priorities are to take your medication, eat well, exercise, get plenty of sleep, and treat yourself to something nice from time to time, however small. Make sure you are doing something every day which puts a smile on your face.

• Set yourself achievable goals

Try doing small but productive things at home – making a tiny change every day can have a huge impact over time (even if it is just clearing out a drawer, or throwing away that ugly pair of jeans you know you’re never going to wear). The more you do this, the easier it gets and the bigger the results.

• Being aware of your thinking

When our self-esteem is low we have the potential to be our own worst enemies – in fact, that little voice in your head might not be on your side that often. Being aware of your thinking is the first step to dealing with this. Many people have made real progress by participating in mindfulness classes, others from gentle or more challenging levels of exercise such as yoga (which has the added benefit of super flexibility!). Why not check what’s available in your area or online and try a few things out? Turn your inner dialogue into your number one fan instead of a hater.

• Getting some gratitude

Being grateful for what we do have in our lives can be so powerful. Writing a list of what you can be grateful for regularly can really shift your thinking to a better place. I do this daily and it works for me. Amongst other things this week, I’ve experienced gratitude for my home and having everything I need; that I made time for coffee with good friends; being warm and cosy in my new white linen duvet set at night when it’s raining. It might sound a bit cheesy, but each of those grey hairs is a gift I didn’t think I would get!

• Never be afraid to ask for what you need

Speak to a relevant professional or local HIV organisations to find out what they offer, and get stuck into on-line resources. Many such organisations know there are challenges posed when HIV and ageing pair up, and are adapting their services and what they offer in response. Get in touch with your local organisation and speak to them about your needs.

• Invest time in your friendships

My friends are so important to me and have got me through some of the hardest times in my life. I believe that a small, but strong core group of friends will endure. My advice is – be a good friend to others and you too will have good friends. But most of all, don’t forget to be a good friend to yourself.

For more information on how to look after your long-term health and happiness, head over to plan ahead for more information.

Paul Thorn is the author of HIV Happy. The second edition is out now.