“Health is a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity” World Health Organisation, 1947
It has long been acknowledged that living well with a chronic illness, demands a holistic approach that encompasses the physical, mental, emotional, social, spiritual, sexual and financial wellbeing. When I got my diagnosis several years ago, besides the need to be loved, one of my biggest concerns was whether I could fulfil my work-life aspirations let alone earn an income that would sustain me and my then young teenage children.
It was during the first five months of my diagnosis that I sat in my bedroom, confused, numb, ashamed and even shocked that something like this had happened to ME. It was during those five months that I learnt that HIV can happen to “any ME”. And that “any ME” could be a homeless person or a celebrity like Magic Johnson. Unfortunately because HIV is a disease that classifies beneficiaries as people of a wrong social type, there are hardly any visible Magic Johnsons (with a pre-existing sound economic and social status) who had come out and continued with the same affluent standard of life. Most literature I came across highlighted ‘stigma‘ as being central to living with HIV highlighting poverty both as a reason for and consequence of HIV.
The more I looked at what career options there were, the more scared and frustrated I got. With a fairly good HIV prognosis I surely did not want to continue with my journey on a poverty line. I searched further for inspiration from HIV positive role models who had gone on to build their careers after their diagnosis and an interesting picture emerged. It seemed at the time, that there were four categories of people living with HIV:-
• The needy and heart tugging images of those we see on TV with torn clothes, skinny bodies, begging bowls, etc. namely those who have earned their livelihood by exchanging their stories for the few dollars donor agencies collect on their behalf.
• The committed activists who continue to fight for the human rights of their peers; these often have good pensions or had access to benefits – in third world countries this sacrifice is economically harder.
• The mentally, emotionally and socially assaulted who have abdicated their humanity and dignity as they are caught up in the benefit trap with a growing gap in their C.V.
• The people who are simply too ill to work or do anything to help themselves.
Outside these groupings I was at a loss to find ordinary people with ordinary lives living with HIV and getting on with their professions/work. Searching further I stumbled on two additional sets of people living with HIV:-
• The detached professionals who uphold their right to confidentiality as they passionately commit their working lives to providing services for those service users living with HIV. Sometimes this professional would be ‘open’ in a work setting but still remain undisclosed in any other arena, and
• The professionals who withhold their HIV status so as to lead a relatively normal life that avails them the freedom to work in the open market so as not to restrict their career and work aspirations.
The choice often remains that either one confronts their HIV status by working within the HIV field (which is a safe environment), or one keeps mute about their status and remains in preferred employment - but at what cost? - As Handy (1994) puts it “if economic progress means that we become anonymous cogs in some great machine, then progress is an empty promise”. I beg to ask; as anonymous cogs represented as statistics with a face or story, how do we stand up to demand what’s rightfully ours? That of our freedom, our humanity and our dignity...
To change this tide, we have to try to do something different. Perhaps when people living with HIV are seen as workers, business people and professionals, with the same competencies and challenges as any other individual, then any attempt to hide the truth would not be necessary.
For me, my destination to a place where a generation of people living with HIV are aspiring to freely stand up, make life happen for themselves and be counted, gave birth to RestorEgo (www.restorego.com)
The struggle of buying a house and worrying about life insurance... The challenges of negotiating transatlantic travel when your company decides you should attend that conference whilst unaware of your health status which prohibits entry into certain countries.... Dating someone you like and taking the risk of disclosing to them when you have not disclosed to your employer; these are real issues faced daily by modern day professionals and business people living with HIV in their work places.
For a professional who has not disclosed their situation at work....and even for the professional who has disclosed only to find that information being used against them, there are no ready answers. The HIV Business Professional Network aims to help do just that. By supporting each other, RELEVANT policies can be formulated to help create a world that we are happy to live, work and play in....as Catherine my co-founder comments:-
“It is time to mobilise HIV-positive professionals into action to play a ripening strategic role in moving forward the direction of the discourse on HIV on both the national and global platform.”
I would like to finish by acknowledging that HIV is still very much a personal and subjective matter and as such, I would like to state that this network is open to both concerned and affected individuals and stress that member’s confidentiality will always be respected.
Thandi Haruperi
For further info and suggestions please contact: thandi@restorEgo.com
Reference – C. Handy (1994) The Empty Raincoat. Making Sense of the Future, London. Hutchinson
