Getting HIV support from your healthcare team

Written by Angelina

The key to making the most of your Healthcare Professional (HCP) appointments is to PREPARE.

P – Plan
R – Research
E – Explain
P – Prioritise
A – Ask questions
R – Return
E – Explore other options

Plan

Before your appointment, it’s a good idea to think about what you want to get out of it.

I’d recommend writing down any questions you have, any HIV symptoms you’ve experienced and how often you get them, and the top three things you want to discuss. This will act as a reminder for when you’re in your appointment so you can make the most of your time with the HCP.

Another way to plan ahead and save time with your HCP is to know your viral load and CD4 count. It is also useful to know the names of your medications – both antiretroviral (ARV) and any others.

Research

It’s good to do some research if you experience any symptoms to see whether they could be related to your HIV medication. This applies no matter how long you’ve been taking treatment for – whether you’re just starting out or you’ve been taking HIV medication for years.

Here are some tips for researching your symptoms:

  • Speak to other people living with HIV to see if they’ve experienced anything similar and ask them how they dealt with it
  • If you have access to the internet, do a simple search to get some basic information
  • Make sure you use reputable sites such as HIV i-base , NAM Aidsmap or The Body for reliable information

One thing to remember when you do research, is that these sites are not diagnostic tools – you need an HCP for that! But they can provide you with useful information and further sources of support.

Explain

Talk to your HCP about what’s happening and how you feel in as much detail as possible. No matter how embarrassing it might be, doctors hear and see all sorts of things on a daily basis and aren’t going to judge you. Chances are they will have heard it all before.

If you’re experiencing side effects from your medication, speak to a HCP as soon as possible and be sure to tell them:

  • How often they occur
  • How severe they are
  • To what extent they impact your day-to-day life

Prioritise

Even though your HCP will do their best not to rush you, most appointments only last a short period of time (sometimes only few minutes). So, if you have something that is really concerning you, make sure you talk about that first. Try not to wait until the end of the appointment to ask important questions. If you can, focus on one or two main issues per appointment as this will give your HCP enough time to deal with them more effectively.

Ask questions

Be ready to ask questions in your appointments. I always write down my questions before the appointment so that I don’t forget them by the time I get to speak to my HCP. If you have any queries, no matter how big or small, you should ask your doctor.

For example, ask about potential interactions between your HIV treatment and other drugs you may be taking – for other conditions or recreationally. It’s important to be honest with HCPs if you are taking recreational drugs as it may impact your HIV medication.

If you don’t understand what your HCP has said, it’s okay to ask them to repeat it or explain it in a different way. They often don’t realise when they start speaking in medical jargon! The important thing really, is to not hold back. After all, these appointments are about you.

Return

If things don’t improve after your appointment, make another one and go back to the clinic – or you could go to a Walk-in clinic if your hospital/care centre has one.

If your symptoms persist, don’t ignore them. Your medication shouldn’t limit your quality of life so contact your clinic. Some of the side effects of ARVs are only short-term.1 However, if those persist, let your HCP know – you are not being a bother by telling them about your health.

Explore other options

Peer support is extremely important in your journey with HIV.2 Try to access services that provide peer support either in person or online. They can put you in touch with a wide and empowering community made up of people living with HIV.

If you feel intimidated by your HCP, or you don’t feel comfortable articulating your concerns or asking them questions, then take someone you trust along with you to your next appointment. They can boost your confidence and ask the questions you don’t feel comfortable asking for you.

You can get some great tips just by speaking to other people living with HIV about how they manage their treatment. Helplines such as HIV i-base also provide excellent and patient-friendly treatment advice. For a list of HIV services near you, visit the NAM Directory of HIV services worldwide.

Find out more about managing your HIV treatment.

  1. Montessori V, et al. CMAJ. 2004; 170:229–238.
  2. Bateganya M, et al. J Acquir Immune Defic Syndr. 2015;68:S368–S374.
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