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Comment: The second coming out – a PinkNews reader reflects on being HIV positive

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  1. Disclosure about HIV is the biggest problem we +ve people face & I recognise all the emotional turmoil that this causes.

    I took the decision early on to be open about my status but I know there are many living with HIV that lead a “double life” – this causes them untold anguish & emotional difficulties.

    Sadly in my experience our fellow gay men is that they are not as understanding as they might be, in fact I think some perpetuate the fear & stigma that is still so evident today!

    I am heartened by the fact that I do know several sero-discordant couples who have embarked on successful relationships & have not allowed HIV to come between them.

    I think the key to all of this is being confident about being +ve, realising that it is a very small virus (we all harbour viruses) & is therefore only a small part of who we are.

    Sadly those who are either diagnosed late or start treatment late seem to fair less well & there are added complications which impact on their health.

    1. Getting the right level of support from close friends & family is vital, but often because of the disclosure difficulties this help is not available & many newly diagnosed individuals find themselves extremely isolated at a time when they are extremely vulnerable. Whilst HIV is treatable with well tolerated drugs, the psychological impact is not so easy to treat.

      We certainly need to do more to provide the follow up support that many people need & I am encouraged that clinics like 56 Dean Street, Kobler Centre & the clinic at Charring Cross Hosp are developing peer support networks in for patients at those clinics. We need more of these great initiatives particularly in this time of cost pressures.

      Often those newly diagnosed, those starting treatment, or those having a difficult time want to speak to a fellow +ve person who they know will have some 1st hand experience many of the issues & be able to answer the questions that they are too worried to ask the clinical staff.

  2. Thank you, Hans, for being so brave and for sharing your story with us. It is very good to hear you have a supportive partner, and supportive family and friends, but I am sorry to hear that there are times when things are very difficult for you.

    It is so helpful when brave and articulate people such as yourself help to communicate to others the impact of contracting and living with HIV: helpful (hopefully) to those who treat the risk of contracting it very casually, and helpful to other people who already live with the virus.

    Betrayal of trust is one of the most harmful, painful and destructive things one human being can do to another: whether it relates to infidelity in a relationship, non-disclosure of HIV+ status before a non-safe sex episode, or any other kind of betrayal.

    I very much hope that your valuable life will in the future bring you great peace, happiness, good fortune and good health.

  3. Thank you, Pink News for publishing this, and Hans for writing it. It needs to be very widely circulated. Especially amongst gay men, younger men in particular.

    1. factsandfigures 24 Jan 2013, 5:51pm

      This news item was published as Anonymous and note “Hans” is used for writing it?

      1. I did write this article, but did not feel it is of importance to have my full name displayed throughout it.

        HR.

        1. Well done you for highlighting the important & often difficult issues we are faced with when receiving a positive diagnosis. It is very encouraging to read personal stories from people living with HIV – PN take note we need more of the same as all too often all we read about HIV are the new infection rate stats, developments in new drugs & other interventions, but we seldom get the opportunity to hear from those of us living with the virus.

          Thanks for writing this – it may help break down some mis-conceptions about living with HIV which are sadly still very much evident…………….things are slowly changing as more of us feel comfortable being open about our status & sharing our experiences. Thanks for sharing ;-)

  4. Is the picture correct for this news items?

  5. What A Friend We Have In Science 24 Jan 2013, 6:04pm

    POZ.com has just published a study that confirms that in the str8 population, those in sero-discordant relationships have 0.0 chance of transmitting HIV to their partners. While it can be argued a risk is still a risk, no matter how small, there are the numbers to back up this statement. What do we do with this information and what attitude adjustments will be made? Here is the article:

    http://www.poz.com/articles/heterosexual_transmission_761_23387.shtml

  6. Brave man, well done.

    If this is any consolation I have several friends who now consider their HIV status a blessing because it had forced them to see life in a different way in that they appreciate all the fresh opportunities that each new day brings and have a new found zest and drive to get up and do the things they have always wanted to do instead of procrastinating and waiting until tomorrow.

    This is in spite knowing they have many, many healthy and happy years ahead for them, but it was the initial shock of their diagnosis – the initial low followed by a rebound into their newfound awareness – that provided the catalyst for their new paradigm-empowered and ambitious selves.

    Had they not contracted HIV they might possibly stillbe stuck in a groove going round and round doing the same old same old.

    I hope these words instill a newfound confidence in you to follow your own dreams and live life to the fullest.

    Love Samuel.

  7. Is this article not about having to address a second coming out and not the “I think the key to all of this is being confident about being +ve, realising that it is a very small virus (we all harbour viruses) & is therefore only a small part of who we are.” as stated”, speak for yourself? HIV, Treatment, Service……. is also that is in question and needs a reality check from those whose provide it! Your beloved 56 Dean Street and all!

    1. The article us also about the emotional difficulties that many often experience when faced with a new diagnosis. To gloss over that is just ignoring the issue.

      I use the example of 56 Dean Street to highlight that peer support is incredibly important and helps avoid isolation. Why don’t you try and stick with the content of the news piece & add something worthwhile reading?

      1. Of the 92,000 people living with HIV in the UK, I am just one, as yourselves living with HIV, I am reminded that people who have lived with this virus 20 years…… find it at ease that those who are just diagnosed or 10 in years find it acceptable as the status quo, wether you are newly diagnosed or long term has it issues which needs to be faced and addressed and the continued apporach that 56 Dean Street, CWT is the all and end all of the HIV service delievry and provision is misleading, patient options are available from other outlets, St. Marys, St. Thomas, Royal Free, Royal London, St. Barts……….. in which equaliam should be applied, its seems from me 56 Dean Street is favoritise by W6 as the norm, is this the case?

        1. To be honest I am not sure of the point you are trying to make, other than to suggest that I favour one clinic over another, which quite frankly is neither here nor there in the context of this story. I go to the Kobler clinic rather than 56 Dean Street because it is easier for me (the clue is in my name). I have found the CWT to be a progressive organisation when it comes to service provision; I am equally aware of the good levels of care that are available in other large HIV centres across London.

          Given that 56 Dean Street is the busiest clinic in the UK, the Kobler has the the largest HIV cohort in Europe, I am more than happy to highlight the initiatives these clinic engage with. We all tend to favour our own clinics as we are very loyal to out Consultants & other clinic staff. Please do let us know the virtues of your own clinic & the initiatives they too are involved with, it is always good to hear of others experiences!

  8. I remember that’s how I tested positive. I just had a nagging feeling something was wrong. I think I already knew actually. I wasn’t shocked when it came back positive, but I was absolutely terrified.

    Not of the virus, mind you, but terrified of being rejected by the people I love.
    My experience of the gay community in Australia, is that it’s cruel and shallow. I felt far more accepted as a positive, fat, hairy man in the UK.

    I too don’t work, I have many health issues, some caused by medications (peripheral neuropathy) and others are mental health issues to do with my self esteem which has been incredibly damaged over the years from constant rejection and fear of rejection.

    It’s nice to know though, that I’m not alone in my struggles. Alot of the time, what is presented in the media, are stories of “super hero positive people”. The olympians, success stories.

  9. I’m not trying to be insensitive but I saw that the author of this was in the comments and I am very curious, why did you delay your HIV treatment for several years?

    1. Matt, I did not need treatment, it was as simple as that :-)
      And…. you’re not incentive, it’s a fair question.

      I was fit, healthy; everything was fine for many years until I developed PCP and after that, it was obvious I had to go on HIV treatment.

      Depending on the country you are from/in, the start of treatment differs.
      In some countries, it is “the norm” to start treatment immediately after the diagnose, in others (Like the UK), it is believed that it’s better to wait until it is truly needed, as otherwise, the body might already be resistant to the meds…

      1. Were you not being monitored regularly at the time, or was the PCP something that was unexpected at a higher CD4 count? Sorry to ask, just interested in understanding the reasons why your health deteriorated so quickly that you were hospitalised, sounds very worrying!

        1. I was not being monitored because I was informed that all my stats were very, very good.(This was back in Amsterdam – The Netherlands)
          Only years later, I started having regular check-ups (Here in London) and then out of the blue, my health deteriorated; my body weight had dropped to about 7.5st (from 10.2), the oxygen level in my blood had dropped to around 20% and then PCP raised it’s ugly head, no warning, no nothing. That’s when I ended up in hospital . The clinic I went to and still go to (Mortimer Market) have always been nothing but excellent for me, so…. that’s why.

          1. Something akin to your situation occurred to a friend of mine. For four years after sero-conversion his CD4 count was deemed not low enough to warrant going on the treatment. Then suddenly he came down with a hideous case of shingles, one side of his face and neck erupted into large puss-filled craters. They did tests and found his CD4 count had plummeted to 100. They put him on treatment for the shingles, and as soon as it cleared up they put him on treatment for HIV.

          2. I think this particular case highlights the need for the patient to be given the choice of when to start treatment. The current clinical indicator is a CD4 cell count 0f 350 in the UK – but this is a guideline & not an absolute. Some individuals will not be able to fight off infection at higher CD4 cell counts whereas others (like myself) have experienced relatively low CD4 cell counts (my lowest was 118) and be perfectly healthy.

            Dr’s need to listen to the patient & likewise as patients we need to sometimes be a little more forthright in our own feelings about treatment. There is a big international study called START which is due to report in 2015 & concerns the optimum time for treatment to begin – currently it is CD4 of 500 in the US which is indicative of commencing treatment prior to any significant loss of CD4 cells. In an individual who is negative the CD4 cell count has a range from 400 to 1600 cells / ml of blood.

    2. Jock S. Trap 25 Jan 2013, 10:45am

      For some HIV treatment is needed straight away but many like myself didn’t need to because I was healthy enough… it was an unrelated problem that lead to me having to go on meds.

      I am pleased I didn’t either because meds in 1998 where far more different than those when I started nine years later.

      Knowing people that were put on for example 23 pills a day I just take 2.

      It has to be down to the individual and the doctors to know whats best for the patient.

  10. Jock S. Trap 25 Jan 2013, 10:42am

    Completely agree. I found ‘coming out’ as HIV from 1998 far more accepted than now in 2013. And that’s just amongst other Gay men, esp younger men.

  11. My past sexual experiences have been haunting me. Although I’d not engaged in unsafe penetrative sex, I’d still engaged in other risky activities. After my last sexual experience the Saturday before Christmas, I was full of anxiety and decided to go for a full sexual health screening at my local GUM clinic. I was terrified when they offered me an HIV test. Part of me didn’t want one, but the other part knew I needed to know either way. Yesterday I went back to the clinic for the results. I was in a state all week. Once I got to the clinic I was in a state of anxiety, and the nurse said you’ve gone so pale. I was so lucky to be clear of everything. I feel so sad for people who are diagnosed + it must really change your life in so many ways. I hope this time I’ve learned that we must all practice safe sex no matter what. To me being constantly depressed, anxious and having low self esteem due to gay shame. I’d get wasted on alcohol and think **** it. I can say it’s never worth the risks.

    1. Glad that all your tests came back clear ;-)

      Testing does still seem to be very much a very anxiety provoking experience – I wonder what more we can do to ensure the level of anxiety is reduced, thereby encouraging more people to test on a regular basis?

      1. W6_bloke

        An interesting thing I have noticed is that people who think they may possibly have contracted HIV – even if the risk is microscopically small – can be more anxious than people who have been confirmed as HIV+ve by a test result.

        In the 1980s, one clinician referred to very anxious people unsure of their HIV status as “the worried well,” and I remember him writing that it was often the case that this group was more anxious than those with an HIV diagnosis.

        When I had my HIV test in the 1980s, I was incredibly anxious, and had been for months. In the end, I realised my anxiety couldn’t get any worse, even if the result was not what I hoped for, which drove me to take the test. Although the result was very good news, I still felt very anxious, and it took another couple of tests with identical results to the first, and some further time, before I was reassured and my anxiety subsided.

        1. “The worried well” is something I come across very frequently, in an extreme form this can be very debilitating as I read stories of individuals taking serial HIV tests as they either do not believe the test result or they believe they are have symptoms relating to HIV infection.

          I wonder what more can be done to improve the testing experience & in the process reduce the high levels of anxiety that seem to be very evident

          1. W6_Bloke

            I think that in these cases, the patient’s problem is sometimes general anxiety, rather than a specific fear of HIV infection. The events that give rise to thoughts (sometimes irrational or very hypothetical) about HIV infection then just become the trigger for that big anxiety monster that has been sitting around in the background to rise to the surface.

            In my view, it is worth helping patients with strategies to dissolve their generalised anxiety, which will resurface and trouble them regardless of whether or not they get the hoped-for HIV test result. Eckhart Tolle’s teachings about observing the “Pain Body” could be helpful, together with the kind of mindfulness techniques taught by Acceptance and Commitment Therapy. Quite often, anxiety, and the futile struggle with anxiety, are the problem: not a thought that declares itself to be “true” and the “cause” of the anxiety.

  12. Canary Guy 25 Jan 2013, 9:11pm

    In my own case I pick and choose who I come out to ask +ve. For example, all my closest and most trusted friends know but, l have not told any of my family (despite being diagnosed nearly 9 years ago) because I do not want them to worry about me.

    Sometimes it would be so much easier to tell them (for example when I stay with them I have to ‘sneak’ off to take my medication, and also ensure it’s out of sight!) but it’s a decision I’m now glad I’ve made.

    All my friends who know have been fantastically supportive and I’m blessed to have them around. It’s helped me deal with being +ve and luckily I’ve never had any anxiety, stress or depression over my condition. In fact, if it wasn’t for the daily pill routine I’d forget I was ever +ve!

    I made the decision on day 1 of my diagnosis that HIV would not rule my life! And, years later it still isn’t.

    I wish everyone the very best of luck who decide to come out a second time, those struggling to come to terms with being +ve xx

  13. rickey lee 31 Jan 2013, 5:51pm

    I was diagnosed HIV+ in 1986 but didn’t start treatment until 2000 because all of my friends who were diagnosed around the same time and had gone into treatment were dying almost as soon as they started treatment. The meds were killing them faster than the HIV so I opted for no treatment. I did very well until I suddenly got sick in 2000 and went into an HIV clinic and found my CD4 count was in the low 100’s. I am 6’2″ tall and I had lost weight until I was at 118 lbs and couldn’t eat or sleep. I started treatment and smoking marijuana, which my doctor suggested even though it is illegal in the state of Texas. The pot helped me sleep and eat and I slowly climbed to 133 lbs and my CD4 count climbed to over 200. My viral load which was 330,000 dropped to an undetectable level and today I am doing good as far as the numbers go but I still have numerous health problems either associated with the meds or the HIV such as peripheral neuropathy, deep depression etc.., . The hardest part is liv

    1. Rickey, I can relate to your story and that’s exactly WHY I wrote this article.
      In my opinion, there are not enough “stories” published about what effect(s) HIV has on a person.
      Thanks for sharing your story!
      H.xx

      1. I was diagnosed in 2006. I was given 2 weeks to live if I did not start treatment straight away. CD4 count of 65, viral load 600,000+. I had viral encephalitis. Ten years into a monogamous relationship, it was a complete shock. I had never been tested before but had been increasingly unwell for 2 years and had been seen by many specialists. By the time of diagnosis I was losing use off my arms and legs and speech control as well as major memory loss. Eventually I was seen by a chest specialist who suggested I take the test. And I am glad he did. My partner tested negative. We are still together.

        The short and long term impact of the diagnosis cannot be underestimated – both the good and the bad. My life has changed substantially. I choose to be open about my status. I have walked in enough shadows in my life to not walk to walk in them for what is left of my life.

        1. Roland, Tthank you for sharing your experience about being diagnosed HIV +.
          It takesa lot of courage to speak up/out about issues like this.
          I hope our “stories” help someone, somehow to come to terms with what has happened to them/their lives and make them realise they are not alone in this battle. Hans Xx

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