BEING AN HIV POSITIVE MOTHER

EMOTIONAL, HEALTH, MOTHER OF ALL LISTS, MOTHERHOOD, THOUGHT-PROVOKING

I held my breath when reading this list. I could feel the disbelief this writer must have felt the day she got diagnosed HIV positive. How could this be happening? Coupled with the sinking realisation that this was going to impact her every day for the rest of her life. So honoured she was brave enough to share her story.

  • On the 21st January 2010 I was diagnosed HIV positive just after my first baby scan.

  • My midwife had taken bloods, along with all the other usual checks, I didn’t give it a second thought as I left the appointment, I was on cloud 9 that I was expecting a baby.

  • The phone call I received to tell me I needed to attend the sexual health clinic was a bit of a shock, they didn’t tell me why I needed to attend but I assumed that a sexually transmitted infection must have been picked up from my blood tests, I felt hugely embarrassed but needs must so off I went to the clinic

  • The words ‘I’m afraid your HIV positive’ will stick with me forever, I have never felt so frightened or alone in all my life

  • I don’t remember anything else about that day, I’m not even sure how I got home or what I did that evening, I now truly understand what it means to be ‘in shock’

  • The next few weeks were a bit of a blur, more blood tests, medical appointments, and of course on my part the inevitable googling – if your ever in my position just don’t do this.

  • Then the slow realisation that I have a life long condition that can’t be cured.

  • That I would have to take medication every day for the rest of my life.

  • That taking my tablets every day would be a constant reminder that I live with HIV.

  • That this was never going to go away.

  • And so many questions – how have I contracted it: will my baby be born with it? what will everyone think of me?

  • Then the awfulness of going through my sexual history with the sexual health advisor, listing previous partners so they could be contacted, telling my babys father – he hadn’t wanted to stay with me when I found out I was pregnant, which I was ok with, but now – what if I died, who would care for my baby? So many emotions.

  • For the record he was even less interested in me or the pregnancy after I told him, but he tested negative, I’m still not certain who I contracted HIV from but in the grand scheme of things it doesn’t matter, I’ve got it and raking over my past won’t change that.

  • I was started on HIV medication straight way, I had to take it every day and still do – its what keeps me alive.

  • I learnt that being HIV positive and pregnant didn’t mean that my baby would be born positive as long as I took my medication.

  • The HIV virus attacks your immune system, if you don’t take medication then your immune system is destroyed meaning you can’t fight infections which in extreme cases can lead to death. In the UK medication is readily available, but in other countries around the world its not.

  • If taken regularly the medication can suppress the virus so that you can’t pass it on to other people, although the virus stays dormant in your blood stream. Therefore mothers who are pregnant who are taking medication can’t pass the virus onto their unborn child

  • I tried to keep a practical frame of mind, I could understand that I wasn’t going to die and that my baby wouldn’t be born with HIV but the emotional impact, well I hadn’t even begun to scratch the service of that one

  • And the challenges of living with HIV were numerous too, HIV is still very stigmatised, very few people are open about their status so the isolation I felt was huge. Was I the only one living with this?

  • There were small challenges like being discreet about taking my medication when out with friends or family.

  • And larger challenges like sitting in the sexual health clinic waiting room, pregnant, thinking everyone must know I’ve got an STI and be judging me because I’m pregnant.

  • Or noticing the sticker on my pregnancy notes indicating I had HIV – it was discreet but I knew what it meant and it made me feel different.

  • And the extra medical appointments along with the side effects of the HIV medication, I’m not going to lie it was a challenge each day to get out of bed, I just wanted to hide and hope it all went away.

  • It was a lot to deal with, recriminations from the babys dad because he had to be tested, guilt about my unborn child – he would have to grow up with a mother infected with HIV, shame that I had contracted it, fear about my future, my babies future – I was in a dark place

  • But the clinic staff and my midwife were fantastic, the sexual health clinic referred me to an HIV support group. They were amazing too, calm, supportive, always ready to listen and above all they didn’t judge me, I started to calm down and understand what living with HIV meant

  • And then through my support group I met another positive mum, someone who was living life, caring for her family, juggling all of lifes challenges whilst living with HIV.  She helped me see that I could do all this

  • She understood how I felt because she’d been there too.

  • The relief I felt that I wasn’t going to be the only HIV positive mother in the UK was indescribable

  • I realise now that it was ludicrous to assume I’d be the only one but I’d never met anyone who was HIV positive

  • HIV affects anyone, some people assume it only affects gay men or Africans – I’m a straight white women but I had to keep reminding myself that I wasn’t the only straight white positive expectant mother in the country

  • There were still days when I’d be reminded of the impact of HIV, for example at the antenatal classes I attended, one of the sessions focused on breastfeeding

  • HIV positive women aren’t able to breastfeed just in case they pass the virus on to their baby through their breast milk. It’s a very low risk if you’re on HIV medication, but its recommended that we formula feed our babies. Sitting through that class was hard knowing that I didn’t have a choice

  • I started seeing a counsellor through my support group to try and deal with the emotional impact of my diagnosis

  • With her help I tried to address my feelings but it was hard, being pregnant is an emotional roller coaster anyway, trying to process all my emotions felt like a huge obstacle

  • And yet I felt I was making some headway, I started to feel stronger, I would do this for my son, I had to be strong for him both physically and mentally

  • I still had days where I would literally stare into space not believing that this was all happening to me, going through all the emotions – shock, anger, disbelief and back to shock again

  • How could I be HIV positive, how????

  • But I made it through my pregnancy and gave birth to a healthy 9lb baby boy – definitely the biggest achievement of my life. He’s been tested for HIV and hes negative, and now he’s 8 I can see that my diagnosis had no impact on his health at all. He’s a lively, outgoing, cheeky 8 year old boy.

  • One day I might pluck up the courage to tell him that I’m living with HIV but not yet, he doesn’t need the burden of it on his shoulders, and although I still worry about my health and the impact of taking such strong medication each day I just try and take each day as it comes

  • It was a tough call writing this list, I know some people might stigmatise me because I’m living with HIV, might judge me for having unprotected sex and contracting it, might think I don’t deserve to be a mother or might think none of those things.

  • The thing with being HIV positive is that’s its really hard to judge how people are going to react and I’m too scared to find out, that’s why I’m not open about my status. I’ve got to think of my son as well I don’t want him being bullied because his mum has HIV

  • And I know the stigma is real, the support group I go to had to find new premises last year and only one landlord would consider leasing to them. Most assumed they supported drug users or that bricks would be thrown through the windows if anyone found out who they supported – that made me cry, nobody has anything to fear from us

  • And through my support group I know of positive people who’ve been dumped when they’ve disclosed to a new partner, who’ve lost friends when they’ve told them, one was made homeless when his landlord found out and one was made redundant shortly after telling his boss

  • So I choose to keep my diagnosis to myself which means I don’t really have a way of sharing my story – thank you for reading this and enabling me to have a voice.

  • ** For those affected by this post, please check out the following support services: Thames Valley Positive (who connected me with the author)  and Postivelyuk.org  **
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7 Comments

  • Reply Sarah January 22, 2019 at 11:30 am

    Hi. A great post!
    I look after ladies like yourself having babies and just glad you felt supported. I agree stigma is still there which is a shame. I suppose its about educating people. As a health professional it is good to hear your story. Your son is lucky to have a brave and strong mum like you x

  • Reply Jen January 22, 2019 at 1:07 pm

    Thank you for sharing your story. Your son sounds awesome!!! Keep on keeping on.

  • Reply Carrie January 22, 2019 at 4:35 pm

    Such an emotional and raw read. Incredibly wrote. Thank you for sharing your story. X

  • Reply Jan O'Neill January 22, 2019 at 10:08 pm

    I have no personal experience of this but I so feel for you and your isolation. If you are anywhere near me (herts /essex borders ) let me know if you need a chat. Jan xxx

  • Reply Holli January 23, 2019 at 4:31 am

    To the author of this list…. you are one Brave, Strong and insanely protective mother. ❤️

  • Reply Hayley January 23, 2019 at 9:45 pm

    I have nothing but admiration and respect for you. You sound incredibly brave and like a fantastic mother. Best Wishes to you and your son xx

  • Reply Charlotte January 27, 2019 at 3:59 pm

    Wow. To the author of this list, you are an amazing brave woman who should be proud of everything you have achieved! I don’t know a lot about HIV but I do think it’s awful there is still such a stigma attached to people living with it and I can only hope that one day that will end!

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