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HIV: when things fall apart

Sixteen years ago, alice welbourn faced the ‘earth-shattering’ news that she is hiv positive. Here she tells how her diagnosis turned out to be, in many ways, one of the greatest gifts of her life.

Sixteen long years ago, on Friday 20th June 1992, I learnt that I am HIV positive. That’s nearly a third of my life now spent living with this bug in my body. How does it make me feel? Physically speaking, I am one of the very few extremely fortunate ones, who feels and looks fit and well. I have been on ARVs (antiretroviral drugs) since 23rd March 2000 (this date also still sticks in my mind) when my CD4 count* had fallen to 170. Now my count is 570 and rising, with an undetectable viral load. I keep fit and eat a good diet. Unlike many, I haven’t had strong side-effects from these powerful drugs. Apart from three or four nasty bouts of shingles in the ‘90s, you would never guess that I have anything wrong.

That’s why there are only about 30 out of 20,000 women with HIV here in the UK who are open about our status, since there is still so much stigma around us and our children.”

But life isn’t that simple, despite the advent of these drugs which can now keep us alive. My HIV diagnosis was also psychologically earth-shattering. But I have learnt that this diagnosis was also a great gift, which has totally changed my perspective on life. American spiritual teacher, Pema Chödron, wrote: ‘When things fall apart and we’re on the verge of we know not what, the test for each of us is to stay on that brink and not concretise… When things are shaky, we are on the verge of something.’ These words speak volumes to me when I remember back to my diagnosis in 1992. I was expecting a baby, full of joy as he grew inside me. Then my world fell apart with my diagnosis. I lost the baby – Jack. I grieved for his death and for mine for a full two years. You never get over these things. You just get used to them.

These events forced me to address the really big questions facing all of us, no matter who we are or where we come from. What is life about? What is death about? What are gender, sex, our belief systems, our values, our relationships with those around us, about? Slowly I began to rebuild my life, realising that I needed to be there for my other children, that maybe I wasn’t meant to give up just yet, that maybe there was something to learn from these experiences.

It has made me realise how fragile life is and to treat each day and each relationship with far more care. I have been surrounded by people who have gone on loving me, supporting me, giving me all the care that I have needed. I have been able to continue to lead a life fully integrated into my community, and fully involved in all decision-making about what happens to me. But this is very far from the reality for most HIV positive people in the world, who are shunned, ostracised, blamed and excluded from life by their communities, and then die very scared and lonely deaths.

Sadly stigma is still rife in Britain also. The best method of HIV prevention is for people to meet someone like themselves who is HIV positive. But only if there is a supportive environment for us to reach out to will we be able to summon the courage to share our experiences. That’s why there are only about 30 out of 20,000 women with HIV here in the UK who are open about our status, since there is still so much stigma around us and our children. I believe strongly that the root causes of HIV in all societies – and how we respond to our diagnosis – are related to imbalances of power wherever we live in the world. The inequity between men and women, old and young, rich and poor, higher and lower castes or classes; between those who feel loved, cared for and respected and those who don’t; and between those who wield political power and those who do not. I hope groups like Positively Women will also enable us together to have the courage to right these injustices and, in doing so, also halt the spread of HIV. ‘When things fall apart … When things are shaky, we are on the verge of something.’ I hope that I can hold on to that. *

This article originally appeared in Positively Women magazine.

*CD4 counts in adults without HIV:
A normal CD4 count in a man without HIV
will be approximately 400 to 1200 cells per cubic millimetre of blood, and 500 to 1600 in women.

POSITIVELY WOMEN

Living with HIV ... Changing Lives

Positively Women is the only national charity providing support for women living with HIV by women living with HIV:
• Providing specialist support by women living with HIV
• Enabling women to make informed choices
• Challenging stigma and discrimination

Are you a woman living with HIV?

Do you want to talk to another woman living with HIV?

Call 020 7713 0222

Women living with HIV answer our helpline from Monday - Friday, 10am - 1pm and 2pm - 4pm. PW will ring you back free of charge. Address: 347-349 City Road, London EC1V 1LR, Tel: 020 7713 0444,
Email: info@positivelywomen.org.uk www.positivelywomen.org.uk

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