We have been providing weekly zoom group support sessions for young people aged 17 and over who live with HIV. These sessions have provided information about COVID and help with understanding which guidance applies to who; who needs to shield or be more stringent with their social distancing; what do we know about HIV and COVID.
We were joined by Dr Caroline Foster for one session for more information on COVID and to share what we know about HIV and COVID at this stage. It was good to hear the key message that if your HIV is well managed, you are taking your meds and you have a good CD4 count (i.e. your immune system is quite strong) you are not likely to be at more at risk of getting very sick if you got COVID than anyone who doesn't have HIV. Caroline reminded us that it's older people and those with other chronic health conditions who are at greater risk of being very sick if they got the virus. So, young people staying home and staying well is as much about looking after the older people around them, as themselves.
We spent time sharing experiences of taking HIV medicine and some people have shared that this is really difficult for them and we know it can be worrying when you are not taking your meds. Some young people felt like they want to try again with their meds, knowing that taking meds at this time is especially important to help develop a strong immune system. Some young people felt they had been dealing with 'barriers' to taking their medicine for a long time and as they shared feelings around this we offered a special session joined by a psychologist, Dr Tomas Campbell, to help think through some of these barriers a little more. Young people shared what had worked for them with their meds, being supported was important for some and having someone to remind you, -this might be an evening call from a CHIVA peer that helped. Others talked about having a clear medicine routine "I always take my medicine after dinner when I go up to my room" A young person shared that she had kept a chart she made at her first CHIVA camp on her wall for nearly 10 years as she was growing up – it was her daily reminder to take her meds.
Tomas reminded everyone that it was ok to be struggling and being able to acknowledge this can be an important step. People should feel able to be honest about what they are struggling with, and Tomas reassured them their clinic teams want them to be honest with them. Some young people found it hard when they felt they were letting people down if they weren’t taking their meds. Tomas also talked about the benefits of feeling like you have some control, which leads on from being able to say what’s difficult, to being able to say what you think you may need.
The sessions included time to reflect on how young people are feeling and coping with such changes to their day to day lives. Some young people have found the lack of routine difficult. Going to bed later and waking up late in the day, leading to people feeling a bit demotivated. To help we have been sharing ideas and strategies on looking after yourself and thinking about your wellbeing. Young people shared ideas on what they could do to help themselves feel better. Trying to make exercise part of your everyday routine, getting fresh air, eating well and maybe trying out new things such as cooking, one young person has been making clothes! Others have been doing things such as photography in their local area, yoga classes online, drawing.
Keeping a check on how you are feeling and noticing the things that lift your mood can help. Talking about how you are feeling with friends and family can be useful, others may like to reflect on their feelings in creative ways, we used ‘Feeling Trackers’ in one session as a way of noticing how you feel on different days and at different times of the day across a period of time. It can help you to notice any patterns and think about the things that make you feel better.
More ideas and resources on looking after your well-being are on our ‘wellbeing pages.’