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After a HIV positive diagnosis

Everyone’s experience of being diagnosed with HIV is different. As the news sinks in and you start to come terms with what it means, you may go through a range of different feelings. You may feel like being by yourself, or being with just your partner, you may want to chat with a close friend, or you may want to speak to a professional counsellor, perhaps at the clinic where you received your diagnosis.

Once you've been told your diagnosis you may want to chat with other people who have are HIV positive. A number of organisations run groups where you can share your experiences with other newly diagnosed people, including groups that are just for gay men. You may not necessarily all be going through the same feelings and emotions, or want to ask the same questions, but these groups can be a usefully way to find support and share experiences.

First steps at the clinic

After your HIV diagnosis, several things are likely to happen:

  • You will be subjected to a flurry of medical tests to establish your state of health and to what extent the virus is affecting your immune system.
  • If appropriate, you may be offered treatments to reduce or stabilise the level of HIV in your body or treatments to help prevent the development of opportunistic infections.
  • Depending on your needs, state of health and circumstances, you will be helped to apply for benefits or put in touch with a social worker or home care support team.

There is sometimes an assumption by professionals that because you are gay you know what to do and where to go. This is, of course, not likely to be true where your new HIV diagnosis is concerned. Of course it may be difficult to gauge whether you’re getting the information you need and want, but if you have any doubts ask – or get a second opinion from a helpline or other organisation.

This can be overwhelming, particularly at a time when there is likely to be a lot on your mind and you may be feeling very stressed and emotional. Spare some thought for how you are feeling. Being HIV positive can play havoc with your emotions. Whether you chat regularly with a mate, attend a group, phone a helpline or seek professional help – don’t ignore your feelings. Some find it difficult to ask for help or accept it, but there’s nothing wrong with getting it or asking for it.

We all need help once in a while – it doesn’t mean that we are weak or incapable. Equally, saying ‘no’ doesn’t necessarily mean you are being awkward – so don’t feel guilty or afraid about saying it. The following tips are designed to make getting help and support easier, and so you make decisions which suit you and meet your needs.

  • Try to deal with one thing at a time.
  • Find a doctor or clinic you like. If you don’t like them, change them.
  • Make decisions in your own time.
  • Take at least some time to learn more about HIV and how it could affect you. But you don’t have to become an expert or know everything at once. Knowing more will help you feel more in control.
  • Consider how you could make your lifestyle healthier. It may include, for example, changes to your diet, having more fun or doing relaxation exercises. Even if you think you’re a sceptic, give it a chance; you can always go back to clubs, drugs, and ready-made-meals – they ain’t going nowhere!
  • Listen to your body, it’s usually pretty good at telling you what it likes and doesn’t like. You may take it for granted but it is your friend, get to know and understand it better.
  • If there are changes to be made to your life, they are rarely drastic or wholesale and you don’t have to make them all at once. You have time.
  • If you’re attending an appointment, there’s nothing to stop you taking someone with you. A little moral support and another pair of ears can be very helpful.

When you are speaking about your HIV, particularly in relation to HIV services, you may come across people whom you don’t know, don’t like or who don’t seem to understand what your needs are. Here are some tips to get you through:

  • Be honest and direct – say what’s on your mind.
  • Consider taking notes and preparing some questions beforehand. This way you can take the information away and understand it better in your own time.
  • Listen to what is being said and think what you want to say next before opening your gob.
  • If you’re getting irritable or angry, say so... then take some deep breaths, take a break, or go to the toilet. If you really can’t handle it, leave. You can always go back when you’re ready.
  • If you’re told something which you don’t understand, repeat what’s been said in your own words and ask if you’ve understood correctly.

Recently diagnosed with HIV | NAM aidsmap
Just found out you are HIV positive… | i-map

Gay Men’s Wellbeing | Positively UK
Just found out you're positive? | Metro Centre
Support group for HIV+ men | London Gay Men's Group
Living Well | Living Well

Beyond positive online magazine | Beyond Positive
Positive Aging in London Forum (HIV) (PAF)
Living with HIV | Cara Trust
Living with HIV | THT

Over 50s LIving with HIV Health, Wealth and Happiness Project | THT
This project  supports the financial, emotional and physical well-being of over 50s living with HIV in Brighton, Bristol, London, Manchester and the West Midlands. Whether you’ve been diagnosed recently or have been living with HIV for many years you may find one of its services may be able to help.

"Al is 26 from Dublin, Ireland and also struggled massively when he was diagnosed a few years ago. “The only shit thing about having HIV is the shock, depression, and anxiety that follows the diagnosis. I felt total panic, thought I couldn’t ever have sex again, that nobody would ever be in a relationship with me. I was severely depressed. I felt lost, lost, lost, for about a year. Doctors were telling me everything would be fine but nothing went into my head,” he recalls. “It all stems from stigma and misunderstanding around HIV”.

The lingering cultural and psychological aversion to HIV belies the incredibly optimistic medical realities. Antiretroviral medication is now so sophisticated that most HIV+ people take one pill a day, which suppresses the virus in the body. This means that HIV+ people on medication have a normal lifespan, live healthily, and can have unprotected sex with their partners without ever transmitting the virus (this is where the slogan U=U, undetectable = untransmittable, comes from).

“I've had HIV for six years now and I haven’t sneezed”, jokes Al. “I'm taking the most advanced medication which kills all the HIV in my blood except the dormant cells. I've been with my boyfriend (he’s negative) for two years and we don’t have to use condoms because I cant pass the virus on. It's impossible. Everything is fine”."

What it’s really like being young and HIV+ in 2019 | Dazed | 28 Feb 2019

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