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Dear HIV,

Today is 19 years we are together. This is also the year I turn fifty. My life has been defined by you, there is no denying it. You have pushed me in so many directions. The highest and the lowest. I never felt so lonely and damaged like 19 years ago. But today you connect me to an amazing community of people that in spite of fear, suffering, illness and stigma, have risen,  resisted and flourished.

As you know, when I give interviews the question that most angers me is: how did you get HIV? It angers me because I know that journalists most times don’t want to know the real reason ‘why’ I got it, they want to get a saucy story and represent me either as some kind of victim, or reckless slut.

But asking why things happen in our lives is important. I grew up in Italy in the 70’s and 80’s in a middle class family: my dad a teacher, my mother an archaeologist. They were progressive and educated people, very involved with the Italian Communist party, and they gave me an unshakable believe of the necessity and moral imperative of seeking justice, and to this day I am incredibly grateful for this.

However they weren’t great parents. Not because they didn’t try or they didn’t love me. They were just not equipped emotionally to give the nurturing and emotional stability a child needed. I don’t think it was a personal shortcoming of their individual personality. I believe that as many people of their generation they had been traumatised and deeply damaged by growing up during the war. My mother lost her mother when she was 9 years old, during the American bombings on civilians, which were part of the ‘liberation’, in 1945, few days  before the war ended. My father hardly saw his father until he was 16, as my granddad was in the army, and after the war finished,spent several year as a prisoner of war. When I was a child they spoke a lot of what it was like to grow up under fascism, during Nazi occupation and the war: the fear, the oppressive silence, the black shirts, the hunger, the terror and confusion at the disappearance of their Jewish friends.

Once the war was over, they finished university and they quickly got married. But both of them struggled with mental health issues: crippling depression and anxiety. Especially my mother was put through the 60’s and 70’s psychiatric system, she was sectioned, electroshocked, medicated into mental dullness. I think the psychiatric system was especially harsh against my mother because she was a woman who was not conforming to gender norms. As children my brother and I managed as we could. My parents weren’t bad people, but they weren’t equipped to protect us, guide us and connect with us as children.

It is not a surprise that as I grew up I struggled with depression insecurity, low self esteem, and started experimenting with hard drugs and sex barely a teen.

I am not telling this story in a bout of self pity. I am just trying to put what happened to me, and many others, maybe in different ways, in an historical context. To be a young girl with depression and low self esteem, in a country as deeply sexist as Italy of the 80’s was a recipe for disaster. As a young woman you were meant to be liberated and sexually available. But the power balance was against you. If you proposed a condom at best you were a fun spoiler, at worst a slut. You couldn’t win. I am not sure it is much better now.

I have been thinking about these circumstances quite a lot lately. Fascism is in the air, it is manifesting as, ‘austerity’ measures against the poor, hostility against refugee, war mongering in Syria, and it eructs in episodes such as the bloody battles in Dover last weekend. I cannot help thinking of the enduring trauma of all the refugees that continue to flee wars, poverty, violence, and how ill equipped we still are to support the healing. I also think how the trauma can run from one generation to another.

I continue to struggle with my mental health, keeping at bay waves of depression, and a voice within that sees the futility and impossibility of it all.

But dear HIV, somehow you have also been the mirror of my strength and resilience. By facing mortality and fragility I had to grow the solidity I couldn’t get from my family. I found strength in the connections with a global community of resistance. What I am learning now is that we cannot address HIV in isolation. Many young people continue being vulnerable to HIV because they are depressed and unable to cope. Sex can be such an easy comfort. As much as I feel we need all the tools we can have in HIV prevention, including PrEP, I also think that mental health, and drug use among young people, especially LGBTQ youth, but not exclusively, are still profoundly unaddressed.

Last week I co-facilitated a group with women living with HIV around mental health and access to services. What I witnessed was a web of sexual violence, HIV, mental health issues, poverty. The web is so tight, that I am not sure how we can start to untangle it. It is not just about access to HIV medication, health services, or an undetectable viral load. It is about creating peace, safety and justice. It means housing, a welfare system that works supporting those who are vulnerable. A world with kindness and compassion, which will not allow fascism to raise again.

17 thoughts on “19 years with HIV

  1. I have also a perspective oin all this being hi v for twenty five years and I am fifty this year , I deal with depression because of society and no real groups that benefit those who are hiv. Long story shotrt I have bit diselexsia due to hiv, lol…. Well I will read yours and tell you how I feel , I married a woman to care for her with ivhiv , I felt guilty that maybe I gve it to her dont know, re remain this long together she had cancer three times and is well now and well she and I hiv all these years I own mountain because had to rise aobcve this virus , been tuf tell yea also.what do I mean on earth welll means my life is tuff and how do I count feels donit count at all. i tried to meet others in Capital but is imposible to meet at same level.I have tried and tried to mkae make life better but we are well climbers we hit the bottom and always work up dome times cant be pulled up we have to do it aourselves har d to do … I stepped on a needle out side of a washroom at b public fair not good luck .. well we have pain this medicine gives you pan pain in your body each and every day, gaba pentince prson pentine I mean, and lorazepham also for anzxiety now… what is my life we all miss a peace of po puzzle in life mine is simple and hard to find .. is true love.

  2. Hi Silvia,
    Thank you for your sharing. And congratulations.
    2 weeks ago I celebrated my 25th anniversary of my HIV diagnosis and tomorrow I celebrate my 50th Birthday. Although our stories are different there are many similarities, depression has been my companion longer than HIV, finding my way in a world that I did not seem to fit has been difficult and still remains so.
    I struggle with anger about the lack of compassion the world seems to have for the most vulnerable. I seethe with an internal fury at the inevitable dismantling of the NHS and the welfare system and watch politicians, the wealthy and big business pointing an accusing finger at those who have nothing, no power for bringing these institutions to their knees.
    I have to search hard for my inner peace, but sometimes I feel it’s sweet breath at the strangest of times so I know it is there. Just like my invisible connectedness that reaches out and joins you in a peaceful and compassionate fight against injustice.

    With love

    Julie

  3. Congratulations Silvia, for your HIV anniversary, your half centur of life (;p) and this blog which sends so many messages. Mireia xx

  4. Hello! I really got a lot out of reading your writing. Thank you.
    I just turned fifty and was infected when I was 19 by my boyfriend in college. He died in 1995.
    I was in a couple documentaries. One is ” HIV Positive Voices”. I stopped being active being on the front line fighting for HIV prevention, stopping stigma, treatments, etc… You have inspired me.
    Thank you again!

    Kimberly
    I would love to talk to u one day

  5. Thank y so much for this as a HIV + man a understand the issues and the ‘how did y get it’ nonsense, also am from Hiroshima and ma parents hibakusha both seriously unable t give me the love needed due t their own emotional scars as witnesses of the bomb. Due t this pursued a long relationship with heroin also severe depression only t be dxt at 32 which was a turning point for the better. So this story resonates so much with me x

  6. My dear, thnx for sharing this. I love the way you see and verbalize things and admire you lots for it – as u know by now 🙂
    xxx

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  10. Congratulations Silvia on your great & influential testimony & letter to HIV….. myself being a HIV+ guy living & working in Nepal; country of Lord Buddha & Mount Everest. I too have been living with this dear infection from last Seventeen years.
    Hope to be in touch with you….

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