HIV

Messages to others living with HIV

'HIV is another education on its own, it is another school of its own. It enlightens you, it exposes you, and it educates you.'

The people we talked to did not want to preach to the users of this website. Instead, HIV was thought to be a very individual journey and people needed to make their own choices: 'It's a personal battle. We all react in different ways.'

However, people did talk about the things they would have liked to have known earlier, and we summarise their suggestions here:

  • Remember, you can always make some kind of choice in how you respond to the virus.
  • It is your life, so take your time if you can, consider people's advice, and work out what is right for you.
  • A number of people felt it important to live in the 'now', not get caught up in fears about what the future may or may not hold: 'Live every day like it is your last,' said one man, 'And don't worry about what you can't change, because you can't change it.' 
  • Find a balanced way to live with the virus, such as avoiding 'HIV information overload,' not allowing HIV to take over your entire life, and allowing HIV to naturally settle into the background of your life. 
  • Keep your feet on the ground, learn more about yourself, be yourself and respect yourself. 
  • Remember there will always be ups and downs, 'but that is true of anyone's life'.
  • Remain hopeful, since hope is realistic if you can get modern treatments.
  • 'Believe what the doctors say… that you can actually remain well… this is not the end of the line.' 
  • Remember that you may well die from a cause other than HIV! 
  • Remember that recovery may be quite slow if you have been very ill.
  • A new diagnosis can be frightening, however, even those who had experienced anxiety or depression believed it was important to be cautiously optimistic.
  • Even if having fun and being of good humour could be a challenge at times, remember that happiness is a part of life: 'Do the things that make you feel good.'
  • Accept that life is a challenge: 'Some of us went through a lot to be where we are now,' and that you sometimes need to be strong and try to think positively.
  • Challenge the way that HIV is stigmatised, even if you just challenge your own ideas. 
  • Accept the HIV crisis and the fact that many people are unknowingly infected with HIV.
  • Remember that HIV positive people are valuable members of society.
  • Use condoms in anal and vaginal sex to protect those who are not HIV positive.
  • HIV negative people: 'Don't be blasé about it. If you're negative, stay negative.'
  • Come forward for HIV testing and take control because: 'If you know your status early enough, it can actually prolong your life, instead of waiting for your immune system to be damaged.'

Last reviewed May 2017.

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