Thanks so much again for this Alex, your willingness to take the time and allow us to interview you through your passion to eliminate HIV stigma is greatly appreciated – Can you introduce yourself to our readers please and let us know where you’re based and what it is that you do?
It’s always such an honour and privilege to share my experience of living with HIV with others.
I am a 26-year-old Early Years Teacher living and working in Greenwich. I am also studying part-time to train as a Play Therapist: a form of creative arts and psychotherapy for young children.
In between this, I am a newly trained peer mentor volunteering for Positively UK and I try to be as active as I can online though my blog: Positive By Default.
Ah! One of our last interviewees Ant, a volunteer for the Terrence Higgins Trust was recently talking about Positively UK! Can you tell us more about it please?
It’s a great way of giving back; helping others but also taking stock of how far I have come since I was first diagnosed.
Positively UK is a charity which really encourages peer-led support for PLWHIV. This is what drew me to the charity where I learnt about Project 100. Project 100 is a programme that seeks to provide all people living with HIV in the UK with access to peer support. In doing so, funding is available to train as a peer mentor. This can lead to an OCN Level 2 qualification in peer mentoring. Peer mentors’ and mentees’ experiences and needs are matched to provide the mentee with support, confidence in living with HIV and managing all aspects that come with an HIV diagnosis. It is an excellent training programme and it will continue to help me on my own journey.
It’s a great way of giving back; helping others but also taking stock of how far I have come since I was first diagnosed.
That’s quite a bit you’re taking on! If you’re happy to discuss your diagnosis today that would be fantastic.
However before we do, I’d still like to know more about your blog. Can you tell us more about that too please?
You can visit my blog, Positive By Default, at www.positivebydefault.com
Since the very early days, I really struggled with keeping HIV as my dark secret. I actually “came out” in the most public sphere possible by uploading a video on Facebook! It went viral (pun intended) and I have never looked back. From then onwards, I have shared regularly through video and written blogs covering various aspects and things that get my goat!
Next month, I will have been living with HIV for two years. Like many, HIV has been life changing for me and prompted me to change my life but it has required me to grow a thick skin and unfathomable resilience.
When I was diagnosed, I had just come out of a relationship and was feeling quite fragile. I found out that I was positive following a routine sexual health screening.
For me, receiving my diagnosis was traumatising at the time. I had to excuse myself to go the toilet to vomit and I made the nurse do an instant finger prick test because I was in denial. How could this be happening to me?
In a haze, I went to a wedding the next day, wearing sunglasses and just sobbing. I don’t know why I chose to do that or how – it’s all a blur even still.
I went back to Devon, where I am from, and told me my mum who was really supportive – she’s been a life line for me.
I remember having a thirst for knowledge and wanting to know all that I could. I accessed many of the THT online services and attended a Newly Diagnosed retreat in Stafford through a charity called the NLTSG. This fuelled my confidence to “come out” about my status. For me, being an open book was the only to normalise my status. This has been the best decision I have ever made.
When I started medication my CD4 count was very low. I had been living with HIV for sometime. I remember being very emotional about starting treatment thinking because of it being a daily reminder. However, I felt amazing after a few weeks and I could not believe how my health had deteriorated so gradually. This was quite a bitter sweet feeling.
After the initial shock, my diagnosis was a kick up the backside to re-evaluate my life. I quit my job, ran a half marathon, started training as a therapist and moved to London.
My diagnosis was quite the catalyst and it has transformed my life for the better in many ways!
I can confirm to our readers that this is the first time I have heard this story – thank you so much Alex for those brave words you just said. You are most certainly one incredible individual, that was so empowering, thank you for sharing that with us.
I would like to know what your thoughts are on PrEP right now. As a pro-PrEP and daily user, it’s helped me as an individual plenty. As a leader in this project it’s important that I state my views here are my own and that I would highly encourage you to voice your views too whether they align with mine or not because this is something that isn’t just making headlines within the PLWHIV community, it’s making headlines across the world!
As you’re already probably aware, PrEP was bashed pretty hard by a certain outlet who I won’t be naming here along with a few other media outlets – I would find it encouraging if we heard how everybody feels towards PrEP whether you are HIV+/neg or unsure, we hear mixed opinions all of the time and I’d like to hear yours…
Where do you stand with PrEP right now?
Ah, PrEP! Such a hot topic and a massive step forward in terms of sexual health!
In the last 18 months since I was diagnosed, I feel that media coverage of PrEP has erupted and it’s put conversations about HIV back on the map.
As HIV continues to be a major public health issue, I believe that it is imperative that PrEP is funded and available. It is not a lifestyle drug which can be likened to the pill. I find that trail of thinking infuriating!
PrEP can provide peace of mind and tear down the walls with regards to HIV stigma. This can give sexually active people, regardless of their HIV status, confidence and assurance.
That said, I feel it is also important to share that I have been approached by a friend who wanted to buy my Truvada (part of my ART regime) from me on behalf of a friend. I do worry about this sort of thing going on and the financial drain this may have on the NHS when cheaper generics should (and will) be available!
PrEP is a real game changer and milestone in the fight against HIV and the proof is in the pudding! HIV diagnoses dropped by 40% at a leading sexual health clinic in London in 2016. Enough said!
Authors note: please have in mind that Alex’s interview was held several days before any further PrEP on the NHS announcement(s)
Yes it has indeed! I must admit I have enjoyed using that figure this last month to challenge anti-PrEP individuals
I’d also like to ask you about HIV stigma itself – following your diagnosis did you experience or witness any HIV stigma? Malicious or non-malicious?
In terms of experiencing stigma, I have been very fortunate. On dating apps and sites, I tend to specify my status where available. This removes the prospect of rejection. I have to say, I do find that I get less attention than I used to but it cuts out a lot of the crap! Maybe I’m just getting worse with age?! Who knows!
On my blog, I did receive one malicious comment saying: “That’s what you fags get!” however I felt that this was generally homophobic rather than HIV-related.
For me, the worst discrimination I encountered was actually in my previous role. After I had decided to disclose to my colleagues, I was pulled in to the office by my line manager and the head of HR to discuss my “condition”. I worked at a prestigious school at the time and their concerns seemed to be about the parents finding out. I was told that I “obviously couldn’t administer first aid” and “what measure would be in place if I fell over and cut myself in the playground?” I was also subjected to a risk assessment. It was totally inhumane and disgusting. I sought advice from my teaching union and THT and I presented the facts with assertion. I did not take it further as it was clearly a learning curve for them. However this did instigate my decision to resign. This all happened 3 weeks after I was diagnosed and I found this to be really damaging at the time. This was a formative experience that has helped me to develop a thick skin.
At the time, I did not have the strength to take it further. I was vulnerable and exploited to attend a meeting with little notice.
The risk assessment is standard practice for colleagues with a physical disability however, in my case, it was being used to say that I was a risk rather than being at risk. This was totally unacceptable.
Being positive, I have found that there is so much ignorance and so many myths. It is often the case that the HIV positive person has to stand up, armed with the facts, ready to educate.
This isn’t the first HIV stigma-workplace related story I heard in this last week or so. Do you think there is anything in addition to what we as ally’s or PLWHIV already can do in order to combat stigma?
For example; and please bare in mind I can only speak on my behalf here as I’m sure people combat stigma in different ways – my way, is usually a zero tolerance policy towards stigma. If it’s within the workplace I will probably throw the rule book in their face and bring the law in.
It angers me that several business I have worked for (not the role where I’m currently present at) still aren’t up to scratch on HIV but also employment law!
Is there anything I can do as an ally or any other ally’s reading this that can help PLWHIV potentially live a better quality of life not only outside of the workplace but also within the workplace?
My biggest wish with regards to HIV, stigma, and the work place would be for everyone, in general, to be aware that they are protected by the Equality Act 2010.
Secondly, I think employers and PLWHIV need to be aware of available resources. NAT have produced some excellent publications about HIV at work and employers’ and employees’ rights. These can be really useful for facilitating open discussions about HIV. In future, I would like to see less onus placed on PLWHIV having to explain everything. Everyone should have knowledge of the basics! Education, education, education!
I couldn’t agree more. Do you have any advice for the newly diagnosed?
My best advice would be to take each day as it comes in the early days. Your are not defined by a label or condition. Although it may not feel like it right now, HIV will become a small part of your life and not the all-consuming monster that it can be when you’re first diagnosed.
In the words of Carl Jung: “I am not what happened to me; I am what I choose to become.” You can choose to live a full and healthy life with HIV with will power, the right support network and a sense of humour. On bad days, I just say: “Stop begin so God damn HIV negative!”
That’s incredible! Isn’t there anything here that we haven’t covered in this interview that you’d like to put out there?
Yes, just a final thought! Reflecting upon what I have achieved in just under two years of living with HIV fills me with a sense of pride and a zest for life. I know now that I can look forward to many more years of living positively with HIV provided that I take my medication and live a healthy and balanced lifestyle. I think about what my life would be like if I had been diagnosed 25 years ago. I have met people of older generations living with HIV who feel a deep sense of survivors' guilt for when they have lost so many close friends to AIDS-related illnesses before the days of highly effective anti-retroviral drugs which enable people living with HIV to live full and healthy lives. I am blessed to be able to look forward to many more years of living positively with HIV.
I look forward to the future and I embrace the challenges that come my way. I have battled with my self-esteem and sense of worth but this heals with time and the right support. Despite obstacles, bumps in the road, pain and suffering, to be alive and living with HIV in 2016 is a comma rather than the full stop that it would have been just two decades ago. For all those lives lost, I see it as my duty to thrive; not just survive. For this reason, I am passionate about being a “positive” ambassador and an HIV activist.
Alex will be working with DESTIGMATIZE in the near future but in the meantime feel free to catch him on your main social media networks!
Want to take part in our #STIGMAWARRIOR campaign? Have your say on HIV stigma and get in touch: email@example.com
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If you’d like to check out ‘But I Like It’ tweet them here or visit Johann’s website here