Bernadette Bailey shares her journey living with HIV and how her grandson inspires her every day.
Ifound out I was HIV positive at the age of 48. I bought a flat, applied for life insurance and a week later my cover was declined. The blood test had revealed that I was HIV reactive (antibodies found). After some soul searching, I decided I would walk this journey openly HIV positive so I could make others aware that this disease can happen to anyone, at any age.
When I publicly disclosed my status, some people questioned why I was talking about it so openly and putting myself through the humiliation. My response has always been that I refuse to live with this virus like it’s my dirty little secret − someone I loved and trusted did this to me. I didn’t protect myself, because I was naive and ignorant of HIV.
People often ask how I got “that sickness”. Some won’t even say “HIV”, but I need them to acknowledge it.
For the past two years, I have been raising my seven-year-old grandson, because my son fell on hard times and I offered to step in and help. I don’t want him to be teased, ostracised or victimised because of his Nanna’s status. The thought that the stigma could prevent him from living a normal life is heart-wrenching. I want him to be a happy well-grounded child for as long as possible at least until the day comes when I will have to tell him the truth. Some days I look into his innocent eyes and wonder how I will start that conversation when the time comes. Hopefully by then, HIV will be just another chronic illness.
On the days when courage fails me, I remind myself I can’t fall to pieces. After work, I have to collect my grandson from aftercare – there’s a young, innocent boy who depends on me to be there for him. I don’t have time to marinate in my sadness.
Being openly HIV positive is not an easy path to walk. My healing has been slow, but it can’t be rushed. Forward is forward – regardless of the pace. Much of my healing needed me to work through the selfstigma of feeling dirty, diseased, contaminated, flawed, imperfect, and unfeminine. I used to sit on my bed for hours just staring at the wall. Your value system and sense of self become so warped. The sadness used to consume me, but then I realised I needed to control my thoughts and take responsibility for not using a condom. I knew in order to heal, I needed to harness every bit of resilience I had. I needed to bounce back from this and get my life back.
I want my grandson to know what mental strength looks like. I need him to know that together with my strict ARV regime, I will fight this virus for both of us. The secret is acceptance and magic happens when you don’t give up on yourself. The universe loves a stubborn heart. Gratitude plays a huge role in healing. Once you focus on all that is whole and right in your life, your path becomes easier. You realise you made it past a day, a week and eventually a year and suddenly you realise it’s doable. You will live, you will thrive and you will be happy again. You will realise there is life beyond your HIV diagnosis if you take your ARVs religiously. We have to change the perception of this virus and attitudes towards it. Educating everyone on HIV is crucial.
My viral load is now undetectable, so I can’t spread this virus to anyone else. For me, this is the next best thing to finding a cure. It gives me peace of mind knowing that I’m not a risk to anyone.
I am happy to be part of the Shout-It-Now #TestandTreat campaign that highlights people living with HIV and deals with the stigma around this. LL
‘ On the day when courage fails me, I remind myself I can’t fall to pieces’