Positive Stories: Living and working in HIV in the UK
Sue lives in England. Her diagnosis has motivated her to become involved in the field of HIV. She is fighting stigma every day through her activities mobilizing her professional knowledge and passion.
Country of residence: England
Country of origin: England
Profession: Senior Manager NHS, Registered Nurse
What is your involvement in the HIV field?
Advocate at a political level, targeting politicians, designing national standards in the UK and in Europe on human rights issues and HIV.
How has HIV influenced and / or shaped your everyday life and habits?
I have two lives, the HIV world and my home-life, and both are totally separate.
Like most people, when diagnosed I was numb from head to toe. I didn’t believe the consultant that medication would give me a full lifespan. I had seen the 1980s tombstones that stated this deadly disease could kill you and there was no cure. When diagnosed, I struggled with being told that I would have to take medication for the rest of my life. I had a phobia about taking any tablets having suffered anaphylactic shock twice, once at the age of 18 after a dose of penicillin and in my 30s after taking an Asprin. Taking ART for the first time was so scary. Ten months later, I felt so depressed that one day in 2010, I thought about committing suicide, to throw myself off a nearby bridge. It was a reaction from Efaverenz. I changed to monotherapy and since that day have never looked back.
HIV changed my life completely. I took early retirement from a 40-year career in the NHS and launched into finding out more about the virus. Like many people of my age, I am 64 years old, HIV did not exist when I was a teenager so I knew very little about it. As a passionate woman, it has driven me to fight for those less able having presented in parliament in England, Scotland and Europe on the needs of people living with HIV and other co-morbidities. My challenge is to make our policy makers understand how people are stigmatised and discriminated in this modern age where ignorance still exists. I have written articles, had papers published and sat on national committees to ensure the voice of people living with HIV is told.
Yet, I cannot tell the world about my own condition as my children still do not know I live with this virus every day. Why you may ask? It is quite simply because HIV does not just affect you as an individual. In my case, my husband’s infidelity resulted in both of us being infected with HIV and he lives in fear of losing our children if his bi-sexuality is out in the open. Since diagnosis 9 years ago, I have hidden this dark secret when at home, yet am so open in the HIV world, where I feel safe and welcomed. My life is rich and full since being diagnosed with HIV.
What are the key priorities in your opinion presently in the HIV field?
1. HIV needs to be normalised and that means to seen as an equal among other long term conditions and this means continuation of funding to inform society of its changing face. I desire a world where people do not have to hide their diagnosis for fear of what will happen to them or their loved ones if it is known.
2. Promotion of modern treatment & prevention methods to be available to all; PrEP, PEP alongside longstanding existing prevention and treatment methods.
3. Stamp out punitive laws and practices based on ignorance. Punishing people because of same-sex relationships fails to adequately address their needs and will continue to hide those who live with HIV, either knowingly or not.
4. Raise the needs of women, who are often forgotten as priorities, as most targets are for key affected populations.
5. Reduce medication costs to make it available to all.
Are you involved in women projects at the moment?
Yes, I have been involved right from its inception as an idea and will continue to be involved throughout its lifespan.
How does U=U translates for a woman living with HIV?
The Undetectable = Untransmittable campaign offers the opportunity to eliminate the stigma that surrounds HIV. Women telling their stories still highlight the ignorance that still surrounds HIV; in health settings, workplaces, society at large and across country leaders. HIV stigma is a huge barrier to ending the HIV epidemic and the U=U campaign offers the opportunity to normalise HIV and end both internalised or perceived and actual stigma.
What is your view about disclosing ones status in the era of U=U?
As mentioned, disclosure is more than being open about your status with HIV, it can include long hidden issues on your personal sexuality. Discovering my husband’s bisexuality saw him spiral into what he describes as a ‘dark place’, resulting in taking an overdose and he almost died. This came before we found out about his diagnosis of HIV and was harder to accept than receiving a positive result. It is what prevents my own disclosure and he lives in fear of his bisexuality being known.
What are in your opinion the biggest misconception about a woman living with HIV?
That you cannot get pregnant and have a baby living with HIV, when clearly you can.
That women are the same as men and therefore clinical trials do not need to recruit women, which we know there are obvious biological differences and many clinical differences.
In your experience what works best when it comes to supporting women living with HIV?
Peer support from other infected women really helps newly diagnosed women and can guide them through the maze of information that the person needs to know in the management of their own condition.
Positive stories and speaking out also is invaluable for those able to disclose their status. The more women that can speak out, the more it helps to spread information on HIV today, which is very different to the early days of the disease.
What do you think is the most important message presently for women living with HIV in Europe?
Contact a local support group who can help you with your diagnosis and support you to reach your own potential of living with HIV, even if you live in an isolated or rural community.
Do you have any message, advise or wish for the women living with HIV in Europe?
Sharing stories and first-hand experiences of living with HIV is a vital tool to tackle stigma. Please share yours.