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Being HIV-positive and Healthy
Staying healthy, living well and fulfilling your potential
HIV is now considered to be a 'long-term chronic condition'. This is something that affects your health over a long time. Many HIV-positive people have a long life expectancy.1
With this in mind, it’s really important to keep thinking about your long-term goals, are you looking to go to college? Travel? Find ways to make new friends? Get an amazing job? Do you see yourself married? Living where you grew up, or living somewhere else? Having children? (This IS possible without passing HIV to your children or your partner). It’s good to chat to your healthcare worker about what’s most important to YOU about YOUR FUTURE so that he or she can help you to make sure that HIV doesn't hold you back!
“i am going to go to uni, i am going to stay with my boyfriend and i'm going to have an amazing future.” Jay, HIV-positive young person
Staying happy and stress-free
Living with HIV can be challenging, but it doesn’t have to take over your life. It is a good idea to identify the people that you know you can go to for support – for some that is family, for others it could be a youth worker, somebody from your religious or faith community, a friend or a teacher. For many young people, their health worker or doctor is the main source of support. To find an HIV service near you, have a look at this online resource - 'HIV and AIDS services worldwide'.
One of the main ways you can make sure you get the support you need is to join a peer support group for young people living with HIV, if there is one near where you live. This is where a group of young people meet up to share experiences, get support, make new friends and be themselves! Ask your healthcare provider – they may know of things like this in your country or area.
A good way to start feeling connected to people going through similar things to you is by reading about the experiences of other HIV-positive young people.
There is a lot of information that’s wrong or not true out there about this condition – if you’ve heard anything that worries you, contact your health worker or AVERT. It’s good to gain confidence in your condition - tell your doctor if you don’t understand their jargon (complicated, scientific or medical words).
The really important thing is to make sure that you feel able to take your medication properly. If you find this really hard, you’re not alone – and sometimes healthcare staff can make things worse by making you feel rubbish for ‘doing badly’ with your medication.
Many HIV-positive young people don’t experience problems with taking medication – they find it easy to remember, they feel no side-effects and they have no trouble working out how to fit taking their medication into their daily routine. Other people have found it difficult because:
- They experience side-effects like nausea
- They find that pills are difficult to swallow / medicines can taste horrible!
- They find that practical things like carrying medication, or water to swallow them, can be hard to remember.
“At first it was so hard to me ‘cause it made me feel so bad and sick too, but then I got used to it, I am now fine.” 16 year old boy, Tanzania
It’s your healthcare provider’s job to help you to do this. Try to explain any difficulties you have faced with your medicine – even if it’s something like staying over at a friend’s house and taking the medication without them seeing - they may be able to give you some good advice.
When you first start taking your medication it can be good to practice with swallowing sweets.
It can be difficult to look into the future and think beyond today – but focusing on your long-term goals can help you to feel positive about taking your medication – remember that you’ve got LOADS of potential.
“Growing up with HIV I didn't understand, ‘Why me?’ I also didn't understand why I had to take so much medication at the time. So at one point I stopped taking my medication. I would hide it under plants and things of that sort. My Levels were high, very high and if didn't move with my sister in law and brother I would be very, very sick.” J.O. aged 19
If you have trouble remembering to take your medication, it is a good idea to ask a friend, family member or boyfriend/girlfriend to help you to remember.
To help you with your medication, Pozitude have developed an app that you can download if you have a smartphone, to help you remember to take your medication.
Your health care
Some young people find that the healthcare staff they get seen by are always different, and this makes it harder to build a positive relationship with them. See if you can request to see a particular person that you like. Try to find a service you feel that the people there truly respect you. Ask at your health centre if there is a way of giving your health worker feedback on how well they communicate with you!
When you grow up with HIV, it can be really hard to change from child health-services to adult-services. You may have had a nurse that you’ve known for a long time and are close to. Sometimes the added responsibility of taking care of your own medication can be hard. You may want to ask for extra support at this time, particularly with remembering to take your medication or coping with the general stresses of life. Try to find out how other people have coped with this, if you are at a peer support group get advice from others. Don't give up on your medication!
- 1. NAT (2011) 'About HIV'