Many people don’t test for HIV because they’re scared of a positive result, they don’t think HIV affects them or they don’t think they’ve been at risk or are vulnerable to HIV.
In support of National HIV Testing Week 18-24 November 2017, Positively UK wants to remove the fear and stigma of testing for HIV.
During National HIV Testing Week we will be sharing the stories of seven people who have had the HIV test and received a positive diagnosis.
We hope this diverse range of experiences will reduce the anxiety some people may have about testing and will enable those who may test HIV positive to seek support to live well with HIV.
My positive HIV test was part of a wider assessment following five months of tests and assessments to understand my poor health.
Prior to my diagnosis, my last HIV test had been completed some 6 years previously as I had never regularly tested and did not suffer from any STDs and was in good health.
The HIV test that confirmed I was HIV positive was taken by my regular GP as part of a series of assessments which over a number of months. I had been unwell for a while and I had lost weight, energy and motivation and was not generally feeling well. My health continued to deteriorate for several months before a HIV test was requested.
Once the result was advised, I was guided to Chelsea & Westminster Hospital for confirmation at the John Hunter Clinic. This was conducted on the following day of my original diagnosis and I was admitted into the Hospital with PCP Pneumonia.
I was shocked by the result. I was also disappointed with myself. I was part of the generation who could recall the 1980s “Don’t die of ignorance” and ‘Tombstone’ campaigns. I was uncertain about my future. I felt like the world had stopped and that was it.
My long-term partner has been amazingly supportive. He was tested and found to be Negative which brought its own challenges to our relationship but he has never stopped loving me nor helping me through this time.
I bought every HIV book I could find on eBay and Amazon in an effort to understand the literature around this subject. Indeed, I learnt quickly that this environment is changing with such a pace that older books (from the last few years) can be out-of-date as advances in medicines, treatment and research changes amazingly fast.
In addition, the NHS has been tremendous in providing counselling and one-on-one support through the John Hunter Clinic and the staff at the Kobler Clinic have been very reassuring. My Consultant has spent time answering my questions and providing care as required.
Positivity UK was a great peer support network after completing the “Recently Diagnosed” Course which opened my eyes to other gay men in my situation. This has been life-changing in bringing new friends who fully understand my position and can empathies with me. The monthly support group has expanded my knowledge of HIV such as medicine research and provided me with insights which have benefited my learnings with my condition.
I was diagnosed on the Thursday by the GP and on the Friday, at the Clinic, they started me off on Antivirals straight away. I was monitored at the hospital for several days whilst I recovered from PCP Pneumonia and continue to be seen by my Consultant on a 3-monthly basis until my viral load and T-Cell Count stabilizes.
My knowledge of life living with HIV was based upon the media images and my scant learning. Firstly, I expected I would die, and found it hard to accept that it was a chronic illness rather than life-threatening. I thought I would have lesions on my face and body, and similar to Tom Hanks in “Philadelphia” would quite quickly deteriorate and die. I have learned so much from Positivity UK, reading about the subject and from my new friends. I was naïve and uneducated.
Secondly, I have learned from support of charity groups like Positivity UK that life continues and I’m more likely to die from smoking or being run over by a bus than from my HIV which has been invigorating. It has changed me: I live my life not in a hurry but with me as the priority. Good health and wellbeing will support my longevity.
Whilst the initial diagnosis is hard to accept, you have to look forwards and embrace life, and not focus upon what happened, why it happened and what could have changed. You have to accept that life is a journey and this is just one element of your life now and always, but YOU and you.
You also will learn that you aren’t alone: there are groups, charities and friends out there who will support you in this new world but it should not define you (unless you choose to).
Focus upon your own wellbeing, both emotionally and physically as YOU have to look after yourself and live life.