Half-term is on the horizon and I’ll be looking forward to having a week off. I’ve visited 16 schools in the four weeks since I returned from Australia and, even for me, that’s a busy schedule. While I love delivering my talks, I do sometimes find the travelling exhausts me.
Yesterday, I was up and out of the house by 7:00am to get to a school by 8:30am. I delivered an hour’s lecture, then an hour’s drive back, then straight to the office where I do one day of admin work per week for a business in central London. Needless to say, I was totally shattered when I got home that evening and was in bed by 10:00pm, which, for me, is very unusual; ordinarily I’d be up until after midnight.
Being self-employed means I am very reluctant to turn any work down, as every penny counts. I am acutely aware that if I were to become unwell again like I did in 2003, when I had pneumonia, then I would not be earning. So any money I make now, after subtracting my day-to-day living expenses, is saved for that potential loss of income.
In all the years I have been diagnosed I was only unemployed for the first four months, and that was largely because I had just graduated from university and hadn’t had the opportunity to get a job. The distress of diagnosis stopped me looking for work, as I tried to adjust to this sudden change in my circumstances.
After the initial shock I started volunteering at a local ASO and through that, got to know of a vacant position at the local council. I applied and was successful, initially being employed on a three-month contract. I was very fortunate that my first line manager was a gay man who was also HIV-positive and had been one of the founding members of the ASO where I’d volunteered. Therefore I felt able to disclose my status to him and recieved a great deal of support from him and other colleagues, to whom I had later revealed my status.
Although my contract was only for three months, I ended up working in that department for ten years! Throughout that time I was always open about my diagnosis and I was very fortunate to never suffer any discrimination or ill-feeling from anyone. I know that I was very lucky to have that experience, as many HIV-positive people in employment could tell a very different story.
Here in the UK, since 2005, living with HIV/AIDS from the point of diagnosis has been covered by the Disability Discrimination Act of 2005. The Act protects disabled people against discrimination in a variety of fields, including employment, the provision of goods, facilities and services, education and public transport. This was a huge step forward in protecting the rights of people with HIV/AIDS.
After ten years in local government I was still alive and well, something I hadn’t expected at diagnosis, and so I took a leap of faith and went for a new challenge – starting my own business to deliver HIV education to schools. The rest, as they say, is history.
I strongly believe that working has contributed a great deal to my well-being and to my sense of self-worth after diagnosis, and perhaps also to my long-term survival. I know that having a reason to get out of bed in the morning and do something productive with my day is a definite benefit. I hope that continues for many years to come.