(DO’S & DON’T’S)
Using incorrect terminology when talking about HIV and AIDS can be insensitive and harmful to someone with the virus. Even if you are in a group of friends’ company where you assume everyone is HIV-negative, remember that someone in the conversation may be HIV-positive and may not have disclosed their status.
I remember a newly HIV-diagnosed client who approached me for post-counselling, telling me about their neighbour that came for a braai (barbecue) every weekend. The host was diagnosed HIV positive through assisting a person in distress by engaging in mouth-to-mouth resuscitation. This neighbour would regularly rant and show disgust towards people living with HIV. This person’s insensitivity was distressing to the HIV+ host and ensured sadly, that he has not, to my knowledge, ever disclosed his status. This kind of behaviour can be detrimental to the mental and physical health of an HIV person. Be aware of the language you use when talking about HIV around anyone, as you do not know who is HIV positive and possibly struggling with their diagnosis.
If a friend or relative does tell you that they are HIV positive, allow them to talk, listen to them and be understanding of their situation.
Do not say things such as:
- How did you get it?
- Who gave it to you?
- How long have you had it?
- Why am I not surprised?
Rather ask/say:
- How are you feeling?
- Have you started treatment yet?
- How can I support you?
- Have you found a good doctor?
- I am here for you.
Consider rephrasing your terminology when talking about HIV using the examples below to avoid promoting discrimination and misinformation around HIV.
- Instead of using AIDS (when referring to the virus, HIV) – use HIV or HIV and AIDS (when referring to both).
- Don’t say, ‘to catch AIDS’, ‘to catch HIV’, ‘to pass on HIV’ – Do say, ‘to be diagnosed with HIV’, ‘to acquire HIV’, ‘to transmit HIV’.
- Don’t use the phrase ‘body fluids. – Do use, Blood, amniotic fluid, semen, pre-ejaculate, vaginal fluids, rectal fluids, and breast milk.
- Don’t use words like Victims, Sufferers, Contaminated, or Sick, rather say, People/person with HIV.
- Unacceptable phrase: AIDS patient, HIV patient, Patient. Preferred term: Person with AIDS, Person with HIV, Person living with HIV, HIV positive persons.
- A BIG no-no: Positives, HIVers, AIDS or HIV carrier(s). Acceptable terms: HIV-positive people/person, People/person with HIV, People/ person with AIDS
Be direct, non-judgmental, and supportive.
Being diagnosed with HIV in 2004 was a nightmare as there was so much ignorance and misinformation surrounding the HIV virus by both the medical and public organisations.
I was never offered pre or post counselling for my condition. Once diagnosed, I realised what a predicament others less fortunate to access online information and counselling services must be experiencing. Sadly, as no pre, or post counselling was on offer, it left me to gather information and find ways of dealing with my diagnosis myself. I put the lack of a counselling offer, unacceptable, I might add, down to the year 2004, when diagnosed, to ignorance and uncertainty by many medical professionals, on how to proceed during this early HIV period.
I signed up to a do a Lay Counsellor and Victim Empowerment course, educating myself in the process and collecting information and skills to support others in the same predicament.
Before testing for HIV it is essential to get pre-counselling and be well-informed of the reality and practicality of what a positive outcome holds. Post-counselling is equally important as it informs you on what other resources are available and introduces ways of making lifestyle behavioural changes.
Once you are diagnosed HIV positive and have received post counselling which includes a review of your health and medical history, a physical exam, and several lab tests, you will be another step closer to facing the World.
Furthermore, your healthcare provider will explain the benefits of HIV treatment and discuss ways to reduce the risk of passing HIV to others.
The next step will be to have your blood counts done so that your healthcare provider can help you start the medication to treat your HIV (called antiretroviral therapy or ART) as soon as possible. Treatment with HIV medication is recommended for all people with HIV, regardless of how long they have had HIV.
Your blood count will be done next and include some of the following:
Viral Load
A Viral load test measures the amount of HIV in the genetic material in a blood sample and indicates how much of the HIV virus is in your body. The test measures the number of HIV copies in a millilitre.
CD4 Count
The CD4 count is a test that measures how many CD4 cells you have in your blood. These are a type of white blood cell called T cells.
Creatinine
Untreated HIV infection can lead to loss of lean body mass and result in reduced serum creatinine pool and the serum creatinine level, affecting your kidneys.
See https://www.aidsmap.com/about-hiv/other-blood-tests for other blood test information.
If your HIV is left untreated, it can cause substantial weight loss, often accompanied by diarrhoea, prolonged weakness and fever. HIV can also cause neurological complications with symptoms such as confusion, forgetfulness, depression, anxiety and difficulty walking. I know this as I, due to lack of medical advice on starting my medication, experienced blackouts, hallucinations, and loss of memory, amongst other acquired health challenges (I was unable to recall my four-digit pin, Doctor’s name, cell no. and more).
When coming to terms with your HIV positive status, you may find yourself shifting from your ‘normal’ mindset to cope and implement new strategies to take control. Know that there are actions you can implement to cope with your diagnosis.
- Talk to a counsellor or trusted friend and try to have open, honest conversations about HIV, feelings and goals.
- Educate yourself as much as you can with up-to-date information about the dis-ease.
- Being diagnosed with HIV is life-changing news. Listen and learn from people that are living openly with their HIV status.
- Get moving and exercise for an hour at least 3 to 4 times a week, even if it is just walking!
- Review your eating/diet habits and adjust accordingly. There is little or no need to change if you currently practise a healthy eating lifestyle.
- Get enough sleep.
- Adhere strictly to your medical treatment.
A chronic condition can affect anyone. How you manage your health makes the difference.
You can get cover of up to 1 million rand for your chronic health condition and up to 10 million cover for your HIV status, SMS LIVING to 33857 to find out more, I did!