One of the issues with writing a blog like this and indeed in general when living with HIV and needing to manage a drugs regime is that, at points, it can start to get a bit… ‘all about me’.
This is not of course the reality. When an HIV diagnosis is made it impacts on the people around you, much like (to take a particularly ripe metaphor) ripples on a pond. Those closest to you must also deal with the news and the implications, particularly those with a close physical relationship with you.
With this in mind and in an attempt to reduce the ‘me-centric’ nature of this blog I’m not writing it today, I’m going to sub-let it out to those people around me who, when I was diagnosed, had to deal with the news too and who have, for the last 8 years stayed with me, loved me and managed to keep me (relatively) sane; may I introduce my sister – Jo, my Mum – Ann, Dad – Kenny, best mate – Sam, my boyfriend – Troy and my friends and colleagues old and new – Claire, Stacey, Jan, Ali, Julie and Amy.
Jo – I remember exactly where I was when Steve called me to tell me he’d been diagnosed as HIV positive. It was an unremarkable midweek morning at work. When Steve phoned I went outside to speak to him and when he broke the news to me I was wandering round the work car park with tears streaming down my face: not a pretty sight! Why was I so upset? Everything I’d ever heard about HIV had been distinctly frightening. I was worried about Steve’s health and thought he was going to die sooner rather than later. I thought HIV was something that happened to other people, not my own family.
Mum – I was cleaning the bathroom basin when Steve came in and said he had something to tell me, he said, quite simply and straightforwardly “I’ve been diagnosed HIV positive” My head spun, I felt panic, what should I do? How can I make this go away? All the thoughts any parent has when their child is suffering. Obviously there was nothing I could do, no matter how many nights I lay awake worrying or how many tears shed.
Amy – When he told me I felt a little helpless as I didn’t know what to say. I just remember thinking ‘right, whatever happens I am here for him.’
Dad – When Steve told me he had been diagnosed with HIV my first reaction was, as a parent, I had failed in keeping my son safe. I still feel some guilt that I was not able to prevent it and believe that sexual health issues should continue to be discussed openly to ensure that ignorance is overcome. I also remembered as an insurance underwriter in the early 1980’s that anyone with HIV would have been refused life assurance and effectively faced a death sentence.
Jan – I was quite ignorant about HIV and when I found out. I was scared that he would just die, it made me care a bit more about him because he’s such a lovely person.
Sam – Steve is one of the most incredible men I have ever met and I feel extremely lucky to have just recently celebrated 10 years of friendship with him. It’s been a rough ride at times, finding out about his HIV was awful and it always seemed to me that he was more hurt about how he had been infected than by the infection itself. His strength during that time in his life was admirable, growing up and being a teeneager is hard enough without this kind of news to add.
Stacey – I knew Steve for a long time before his diagnosis and it had a massive Impact on our friendship at the time, not due to the HIV itself, but because he didn’t tell me and instead completely withdrew into himself from what was a very close friendship.
Obviously his reasons were valid and he did what he needed to do at the time but I admit I was rather bewildered by it. By my nature I don’t push myself onto people, I figured he knew where I was and if he decided to get in touch he knew what to do. I didn’t know what I had done to upset him so much and must admit it did continue to bother me for quite some time.
He then got in contact a few years later out of the blue and told me honestly and frankly of exactly what he had gone through, his circumstances and fears for the future. I was angry. Very angry at how someone could hurt him in such a way, angry at what Steve had to endure, at how unjust this whole situation was and mostly angry that I had not been there with him through that time of his life to support him and just simply be there for him, if only just spending our lunch breaks together, random wandering around town. Basically the way things used to be.
Troy – My contribution to this is a bit different as I come at it from what it’s like dating someone already diagnosed with HIV, I remember meeting Steve in a pub and sitting down and talking to him. We had that Hollywood spark which we are all seeking in our lives. He told me straight off the bat that he was HIV+, I told him I was a smoker and that we all had our own crosses to bear.
Julie – I met Steve shortly after his diagnosis and what I loved was his sense of humour and the openness with which he talked about what he’d been through. When I went through a really difficult patch 3 years ago I was able to open up and talk about my experiences with Steve and I’d like to think that in some small way his courage in dealing with difficult circumstances inspired me.
Amy – I marvel at how brave he was at the time and continues to be. Sharing his experience has made me respect him more and more, to see him being so strong and determined. He’s never let it get the better of him.
Sam – Steve put on his ‘brave-face-and-deal-with-it’ head on, talking to doctors, persevering with meds until he found the right ones, talking to us and still managing to do well in his college courses. From what I can see, his HIV has never stopped him from doing anything he has set his mind to. Finding relationships, finding a job he loves, his charity work, his adventures and now on top of all that, being a pillar of strength to others who also suffer with HIV, through his blogs and through the Terrence Higgins Trust. I’m so proud of him, and the work he does not only for himself but for others too. Everything he does, he does with gusto and with his sense of humour intact, something which again, I admire greatly.
Ali – I felt quite humbled that he trusted me and counted me a good enough friend to share the truth of his HIV. I remember thinking ‘wow, how lucky am I to have this wonderful man in my life.’ Steve was always there for me through my trials with my illness, and sharing how he coped and lives with his illness helps me keep going when my pain is bad and I can’t sleep and life just feels too dammed hard.
Claire – I remember feeling totally gobsmacked – I never envisaged an HIV diagnosis happening to someone I know – naive of course but I think lots of people just think it’s something that happens to other people. My only experience of HIV was from TV characters!
Jo – After the initial shock my attitude changed pretty quickly. We are so lucky to live in an age where we can quickly and easily access reliable information online and I spent some time researching the facts about HIV. It was a great relief to know that people with HIV can live as long as any other person and that Steve’s day-to-day treatment could be managed with pills.
Dad – I was also aware how much HIV treatment had developed since the western world first became aware of the problem. By the time Steve was diagnosed, I knew treatments had improved dramatically, but this didn’t stop me wanting to read all the information I could on current treatments and prognosis. I was relieved to know that following a quick diagnosis, treatment in this country should ensure that people like Steve could expect to manage their condition and have a normal life expectancy.
Mum – I am grateful we live in a time where research into HIV is constantly evolving and is able to be discussed in a way that was once much harder.
Troy – In terms of managing it within the relationship it’s like being a passenger in a car. You put your trust in the driver, that they know how to drive. You automatically put the seat belt on because it’s just second nature to protect yourself, although you barely think of the reason at the time, then you both just enjoy the journey that you are on. It’s never in the forefront of my mind and I can’t remember the last time I gave it any real thought.
One of the many reasons I love Steve is that we are totally open with each other and talk about anything, so I guess the option to talk about it is there and on the odd occasion that it does spring to the front of my mind, we do talk quite freely and openly about it. But it doesn’t happen often.
I am just thankful and lucky and looking forward to my journey with him.
Treatments continue to evolve and I continue to hope that further breakthroughs in medical research will enable the treatments and long term prognosis to improve even further.
Claire – It never made me feel anything different about him as a person. I did worry how it would impact his life, especially as I knew he wanted to settle down and start a family one day. But I never felt he had changed.
Jo – Nowadays it’s strange to think of how upset I was when he told me. Steve’s HIV has no impact on my life day-to-day: why would it? I’m not the one who has to take medication every day and have regular blood tests. I even take for granted that Steve’s updates on his CD4 count will be good news. But writing this reminds me how lucky I am: that HIV healthcare, combined with NHS provision, has advanced so much, that I have the luxury of saying: “it doesn’t worry me”, that I have a brother who is happy and healthy and can be a positive role model for others.
Mum – I’m proud he has grown into such a thoughtful and caring young man.
Jan – Still barking mad though.
Stacey – We still are not as close as we used to be and I think we can both admit that we most likely won’t be that close again but if you ever he needs help, to talk or simply wants something to distract him, my door is always open.
Ali – I just hope he keeps writing, I feel, through working with everyone to write this, that he is an inspiration to his friends and family. I miss him now he’s not in Hereford.
Troy – I think, reading this, that the way Steve deals with his HIV has informed the way we perceive and think about it.
Dad – Steve has always had a caring and sensitive nature and wants the world to be a better place. Before the diagnosis he suffered from depression and obviously this also needs management. His depression and HIV led to low self esteem despite the family’s encouragement.
This has improved over the last year and I believe that his regular blogs about HIV have been cathartic for him. I’m very proud of the way he has dealt with both these illnesses and know he is capable of overcoming all these adversities and that there are no limits to what he can achieve.
Sam – Steve, I love you darling, very much, and I am so proud to call you my friend. You’ve always been there for me and I will always be here for you. Your HIV is a scary thing but I have never once seen it beat you or stop you from doing anything, and I know it never will. You’re amazing, you’re you and you’re fabulous. Always.
With grateful thanks to my awesome family and friends. I feel very blessed, humbled and loved.
Merry Christmas everyone.
Steve (@SteveOfTheMarch on Twitter)