Ber­nadette Bai­ley shares her jour­ney liv­ing with HIV and how her grand­son in­spires her ev­ery day.

Living and Loving - - CONTENTS -

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’

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