I have a good relationship with my current GP. It took time, a clear vision of what I wanted in a GP, determination, the dismissal of four previous GPs – one I had persisted with for ten years – and about 18 months without one.

During the years that I’ve lived with HIV I’ve gradually honed my self-advocacy muscles. In the beginning of life with HIV I didn’t realise that this would be necessary. I had been lucky – I was healthy and fit prior to HIV making its grand entrance, so I only occasionally crossed paths with healthcare providers. Since then, I’ve learned the hard way that HIV-related-stigma and ignorance is alive and well within the health field.

HIV is not the only condition that requires a long-term relationship with one or more healthcare providers, nor is it the only one that is stigmatised. It does, however, carry a special kind of aura. Like many others, I have been on the receiving end of dreadful, judgemental, and sometimes downright aggressive behaviour delivered by healthcare providers. Fortunately, I have also come across some exceptional people working in the field. I will never forget those individuals and their capacity for engaging with genuine compassion, sensitivity, and a confident professionalism.

Like any healthy long-term relationship, the trust that is developed with HIV health providers takes time to build. It must start somewhere though – trust is built step by step, and by taking some chances. On first meeting my current GP, after giving her some background, I directly asked for what I wanted in this potential relationship. I also admitted that I would very likely challenge her at times! Our interaction was a mutually respectful and honest conversation.

She sat facing me and listened without interrupting, then spoke in response with a kind of unassuming clarity and intelligence. My “gut feeling” about her was very positive and I decided to give her a go. Eight years down the track I feel very fortunate to have her as my primary care doctor. Trusting her means that I’m honest about my choices and decisions. I tell her stuff that I might have hesitated to tell other doctors. Her trusting me means that I have agency and choice regarding my health care.

We are all unique, and what fits for one might not for another. HIV both adds an extra layer of challenge and makes it vitally important to have a good fit with your healthcare provider. The ‘therapeutic alliance’ concept outlines three main components to a strong therapeutic relationship – a warm and respectful approach, collaborative goal setting, and working towards mutually agreed goals.

I’ve adapted the following from an article by Sarah Jacoby that quotes Dr F Perry Wilson, associate professor at the Yale School of Medicine and author of “How medicine Works and When it Doesn’t: Learning Who to Trust to Get and Stay Healthy”.

What makes a strong therapeutic alliance?

You feel like a team

The relationship is a collaboration
You are listened to and know that your concerns are taken seriously
That is, your experiences, preferences, evaluations and opinions are considered.

They know the science and willingly share it with you

They know, or can access, relevant information and can explain it to you
Furthermore, if there are options to approaches and treatments, they can provide you with details, and pros and cons

They acknowledge uncertainties, and will admit to getting things wrong

Healthcare providers are not infallible, and medicine is not an exact science – it’s complicated
Sometimes things might have unforeseen effects, or just not work
They have the flexibility to re-adjust, and to take your lifestyle and preferences into account

They accept your decisions about your health

Sometimes you might disagree with them, or find that you are having challenges staying on track with a previous agreement
A strong relationship built on trust should allow for disagreement and discussion without a negative impact on the relationship

The quality of any long-term relationship with a healthcare provider can either encourage or discourage engagement with healthcare. A strong relationship is a partnership and the more you trust your doctor and feel able to talk with them openly and honestly, the better the outcomes will be for you. One of those outcomes will be that you are actively involved and confident in your healthcare decisions.

Self-advocacy can be hard work sometimes, particularly at times of vulnerability, low energy, or if you’re just not used to doing it. If you want to discuss your options, or brainstorm ways to advocate for your needs, reach out to Positive Life NSW. You can speak with another person living with HIV on 8357 8386, 1800 245 677 or email contact@positivelife.org.au

– Maria

Published in Talkabout #210 September 2024