(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.
HIV can be transmitted through breast milk and increase the risk of perinatal HIV infection.
Maternal ART can significantly reduce the risk of transmission through breast milk, but it does not exclude the risk of infection. In resource-limited locations, such as South Africa. The World Health Organization (WHO) proposes that mothers living with HIV should breastfeed exclusively for the first six months and continue breastfeeding for at least twelve months, including supplemental foods from the second half.
The mother’s health should be maintained with ART (Antiretroviral Treatment) adherence to decrease the risk of transmission through breastfeeding, and in doing so, support the mother’s health.
An HIV-positive mother can breastfeed and bottle feed simultaneously under supervision by their healthcare workers. The healthcare worker will reassure you that ART reduces the risk of postnatal HIV transmission even when the baby is on mixed feeding.
Mixed feeding may affect a good supply of breast milk. It is important to discuss options when considering supplementing with formula with your clinic, health nurse, lactation consultant or Doctor.
I was fortunate enough to have had both my children well before being diagnosed HIV positive. My personal choice at the time was to breastfeed. I did for thirteen and eighteen months, respectively.
Breastfeeding:
- It comprises the correct percentage of nutrients your baby needs, including protein, carbohydrates, fat, and calcium.
- It offers natural antibodies that help your baby fight illnesses.
- It may increase your child’s intelligence.
- It is always available and is free.
Formula:
- It is convenient.
- It is flexible.
- Scheduling feedings may be easier.
- You do not have to worry about what you eat. At times, breastfeeding mothers need to avoid certain foods.
Ultimately it is the mother’s choice and preference as there are benefits to both options. You decide what will work best for you with the guidance of your healthcare worker.
For more on HIV breastfeeding: HIV/AIDS: Infant feeding and nutrition (who.int)
A chronic condition can affect anyone. How you manage it is what makes the difference.
You can get coverage of up to 1 million rands for your chronic health condition and up to 10 million if you are living with HIV. SMS LIVING to 33857 to find out more.
I did!
Chronic illness is a disease or condition that typically lasts for three (3) months or longer and may worsen over time. Chronic diseases generally happen in older adults and can usually be managed but not cured. The most common chronic ailments are cancer, heart disease, stroke, diabetes, and arthritis.
Chronic diseases, by definition, cannot be cured—even with significant lifestyle changes, medication, and other treatments. However, chronic illnesses can be effectively managed symptoms can be reduced through holistic management.
Occasionally we are given an incorrect diagnosis or are misdiagnosed as chronic illnesses can be misunderstood by the medical community. We may not have a name for what is happening to our bodies. It is, however, a genuine predicament that needs managing. Correct diagnosis of a chronic condition can potentially take a lifetime to identify. Hang in there even if you feel unable to ‘get it together.’
Generally, there is no easy cure for a chronic condition, so please do not head out on your own and try things that you think will work. Keep in mind others will bombard you with well-meaning suggestions to ‘try this’ for your condition and advise that you can cure yourself with yoga or the latest diet. These interferences can be upsetting and come from an uninformed place, laying the blame for your agony squarely on your shoulders as if you have not already done everything in your control to improve your health.
Having been diagnosed with numerous chronic illnesses such as cancer, strokes, TB meningitis, heart failure, and more health challenges has led to me enduring many medical interactions. Communications have been traumatic and led to lengthy procedures due to incorrect diagnosis and late detection. However, on the confirmation, the correct treatment and subsequent medication were dispensed, putting me in a position to live a meaningful and productive life.
Nobody is invincible. It can be frustrating to hear comments such as ‘just get up and get dressed’ or ‘you are too young to be sick’. Sometimes a chronically ill person is grateful to make it out of bed daily. Remember, you feel that pain; ignore the platitudes.
Not everyone will take your chronic condition seriously as it may not be visible. People may assume you are following a fad diet or feigning an intolerance to certain foods if you decline certain foods due to your autoimmune condition that can be managed but may still be considered chronic. Remember that any health condition lasting three months or longer will be regarded as a chronic disorder, even though your symptoms, referred to as a ‘flare-up’ may come and go.
Encourage people to ask you about your condition. It enlightens them and also helps you come to terms and normalise it in your head. Sometimes we need someone to listen.
There may be days when you can barely make it out of bed or experience immense pain. Attempt to smile through the pain and tell yourself you will be okay.
Medications you take may make you feel worse than the actual illness itself. The side effects may include nausea, fatigue, headache, loss of appetite, and possibly most awful, irritability and mood swings.
Should your physician recommend surgery, understand that it is not a miracle cure and will not automatically be the final solution as they will not always work for you, or they do, but you may still have pain.
Ultimately, what works for one may not work for another. Follow your doctor’s advice and stick to your medication.
Keeping your spirits up by allowing people to be supportive can add to your overall well-being and a positive mindset.
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A chronic condition can affect anyone. How you manage it is what makes the difference. |
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You can get cover of up to 1 million rand for your chronic health condition and up to 10 million if you are living with HIV. |
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SMS CHRONIC to 33857 to find out more. I did! |
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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!
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Plodding along in the hope that everything will turn out just fine, is not an option.
If you are faced with challenges, whether physical or emotional, will affect your mental state and jeopardise your ability to function normally.
Facing your challenges or fears is the only way to make practical choices in order to change your circumstances. The question is; how do you do that?
Not everyone has a personality type to cope with challenges on their own so acquiring the valuable and experienced counselling/guidance is paramount to get you through tough times.
If you have been through a traumatic event or face issues at work, or even in your personal life, the best way to approach it is head-on and as soon as humanly possible.
Over and above my health issues, many years ago I was on holiday and my then husband had my 18 month son in a backpack carrier and decided to get a view of a mountain from a closer viewpoint. He stood up on a low wall overlooking a sheer drop. I freaked, lost the plot and screeched for him to get off the wall. Prior to that I had no issue with heights, little realising how that one incident would affect me for over thirty years.
Once I decided to own and face my fear of heights, I firstly went on a 1,5km Zipline Tour in Ballito, KZN. After a leisurely nature walk to the top of the cliff I was introduced to the “1st in the world” – all new “Parazip” proceeding to slide on a 400m cable from the top of the mountain. That was around 2014.
I then decided, in 2018 that zip-lining was for sissies, so on World AIDS Day, I proceeded to tandem paraglide off Signal Hill. What a blast and I can honestly say I would do it again.
My life, my choices!
Don’t be ashamed of what you’ve been through or what you’re dealing with.
What are your challenges and what are you doing to defeat them?
There are ways to overcome each and every obstacle; you just need the right tools!
About Cindy: In 2004, Cindy was diagnosed with HIV & AIDS. By 2008 she was subjected to Cancer (stage 3b) and TB Meningitis. Cindy had two Strokes and Shingles, four times in one year. And a hefty bout of Pneumonia… all that in a space of four years. In March 2018 Cindy had a massive heart attack leading to a double bypass.
I often ponder which rock some people and/or organisations live under so I can hopefully go and drag them out before it is too late.
We have a pandemic in South Africa as far as HIV & AIDS is concerned but we, as a community have become complacent and blasé about the situation.
With World AIDS Day (WAD) coming up it has become ever more noticeable as companies are reluctant to make much of an effort to create awareness. This should be an ongoing contribution throughout the year, now WAD does not even seem to garner much interest.
South Africa had 400 and 350 THOUSAND NEW infections in 2012 and 2014 respectively. (Those are the people we know of and have tested). That is ¾ of a million people; some countries don’t even have that many citizens to boast about. You would think there would be a serious concern for the future of this country other than taking up the ‘fight’ for education. Before long there won’t be enough ‘solid’ individuals to continue the future in governing this country.
Do not for a minute think it does not affect YOU; we are all affected one way or another. You may think it does not concern you but I can guarantee you, you do know somebody ‘close-to-home’ that is infected, they may just not have disclosed their status to you , living in fear of rejection.
Many of the ‘big’ stakeholders in the HIV arena do not agree with advocating fear (and for the record, neither do I) as a deterrent of becoming infected with HIV, perhaps it is time we rethink that idea!
Obviously some of these institutions and communities have not seen the devastation it can cause to a person. The consensus seems to be ‘Oh well, I will just go onto ARV’s’, seriously……
If you want to live a life that does not involve daily medication, even if it is the ONE pill, you need to ensure that you DO NOT become infected.
Becoming infected ensures the following:
- You will have to go for either monthly/bi-monthly/four-monthly/bi-annual/yearly checkups.
- You will have to take medication and supplements for the rest of your life.
- You will have added costs to your life.
- You will lose working hours, like it or not.
- It will affect your lifestyle.
- There will be blood taken, tests done resulting in further costs of time, money and stress.
- It will compromise your immune system making you vulnerable to other dis-eases such as flu, pneumonia, TB, Cancer to name but a few.
It may be at the beginning or the end of your diagnosis that you experience these issues, possibly both, who knows what your system can cope with. You will be able to live a pretty healthy life in-between but at some point you will wonder what you were thinking to put yourself at risk.
Having said that, HIV is a manageable dis-ease but you will eventually die from an AIDS related dis-ease, maybe not for quite a while after diagnosis but it will eventually happen.
Yes, we are all going to die and you may say ‘so what’ but why put yourself in a position where you could in actual fact have made the CHOICE not to accelerate the situation.
My final word is to the corporate sector as well as individuals, be informed, learn from those that have travelled that road.
Solution:
Retain the services of a person living with HIV and AIDS who is in a position to engage with staff at branch level and at their weekly meetings.
This will create a personal relationship where individuals will feel a connection to a ‘face’ where they can ask questions immediately or interact via alternative methods at a more opportune time to receive the information they require.
#CindyHIV
Once upon a while ago………….
As an HIV positive individual I had to look at ways to enhance my well-being.
Writing is an outlet to document my thoughts and share with those needing reassurance.
By authoring a book with the title, The Deadly Seducer I managed to incorporate a positive attitude, healthy foods and the experience of dealing with the effects of AIDS that I acquired, namely TB meningitis, pneumonia, shingles, two strokes and Cancer (Angioimmunoblasticlymphadenopathy) which has given me insight into constructive ways to counsel, mentor and live a healthy lifestyle through educating myself and followed up by sharing the same values with others.
Having lived through the numerous health challenges puts me in a fairly unique position to add value to any educational information provided.
I have since written various articles which have been posted to a number of health and education websites, local magazines and a range of newspapers
Later I developed a training manual on some of the latest trends on HIV and being an avid social media participant have posted educational information on a regular basis.
I would like to deliver ongoing education through the media on a weekly/monthly basis as this will encourage conversations around health and wellness as well as the ongoing HIV situation in South Africa.
I see this as an exercise to generate an income for the Non-Profit Organisation I founded as the sponsorship and fundraising is non-existent and there are individuals who are unable to afford counselling and healthy lifestyle guidelines.
Contact me if this is of interest to you and falls in line with your newspaper, magazine or online presence.
cindy@cindypivacic.co.za
Greetings!
I would like to present my course of HIV & AIDS in the Workplace to staff as it is still a considerable concern in the work environment.
Recent stats reported by the government beginning April 2014 stated that there were 400K registered new infections since 2012 and 6.4 million people are infected.
Those are the known persons and affects individuals from all walks of life, everyone is at risk.
Retain experienced workers by educating and avoiding the plunge into additional costs of training new people, their Health & Wellness should be your priority not just theirs.
If you would be so kind as to share the information with the relevant person/persons or point me in the right direction of who manages this form of training, I would appreciate immensely.
Overview
Upon completion of the programme, trained HIV & AIDS coordinators will be able to:
Demonstrate knowledge and understanding of HIV & AIDS in a workplace, and its effects on a business sub-sector, own organisation and a specific workplace.
This provides a broad introduction to HIV & AIDS in the workplace.
It introduces a broad case of knowledge about HIV & AIDS that will enable learners to be informed and caring towards workers in an industry.
The focus is knowledge, skills, values and attitudes in relation to the learner’s own context and experience of the world of work.
Training outcomes:
After completing the training programme the learner is capable of:
• Understanding the effects of HIV & AIDS on the immune system.
• Knowing how HIV & AIDS is transmitted.
• Knowing what behaviour is safe and what behaviour carries the risk of HIV & AIDS transmission.
• Knowing what guidelines and assistance are available to support workers with HIV & AIDS and recognise own role in creating a caring work environment.
• Understanding the implications of the HIV & AIDS pandemic for society, the economy, a business sub-sector, an organisation and a specific workplace.
This programme is also available as a certified accredited option: US 13915 SSETA
Please feel free to ask for more details on this option. I look forward to your response
World AIDS Day 2013 commemorations
BALANCED LIFE Magazine – (Foschini Group)
Written for the LONGEVITY Magazine by Nazareen Ebrahim.
A different observation. Thank you Nazareen,.
