When Marcello got his HIV diagnosis he first worried about the impact it would have on ‘living a regular life’.
Deep down he knew that HIV was a manageable disease but still felt a sense of disappointment. He got tested regularly but after getting sick, his doctor convinced him to get an unscheduled HIV test.
He tested positive and was put onto anti-retrovirals immediately. Shortly after, his viral load had dropped to an undetectable level and he got on with his life.
‘It is amazing, because with the medication we have today you can have an undetectable viral load quickly, but it of course depends on the person,’ he tells Gay Star News.
Of course Marcello felt shocked when diagnosed, but he had a supportive network around him. Moving to Sweden from Italy was also beneficial because it is a ‘little bit more open minded’.
But like many people living with HIV (PLHIV), Marcello does feel bouts of isolation and depression from the stigma he faces.
‘You know the most difficult part of living with HIV is not the sickness,’ he says.
‘The only thing that is really difficult for me are the attitudes of other people… people see you as having something wrong with you.’
Marcello’s experience is not uncommon amongst PLHIV. In fact, several studies have revealed PLHIV experience high rates of loneliness. A UK survey found loneliness among PLHIV was equally common in all age groups, ethnicities, genders and sexualities.
Feelings of loneliness and isolation among PLHIV can lead to problems such as, depression, misuses of alcohol or tobacco, substance abuse, low income and other health problems.
Stigma and loneliness
Experts have blamed stigma as a huge barrier in HIV. Whether that’s barriers to getting tested, or starting or accessing treatment, there is a call to end HIV-related stigma by adopting a human rights approach to HIV and AIDS.
Global HIV education group, AVERT, defined HIV-related stigma and discrimination as prejudice, negative attitudes and abuse directed at people living with HIV and AIDS.
A UNAIDS 2015 report found in 35% of countries with available data, more than 50% of people report having discriminatory attitudes towards people living with HIV.
Prakash has spoken openly about his battle with loneliness since his diagnosis of HIV and Hepatitis C. Spirituality helped him connect with himself and ultimately improve his self-care.
But also not placing as much importance on the gay hook-up and party scene – the one which shunned him after his diagnoses – helped his mental health.
‘One of the first thoughts I had when I was diagnosed was “I will never get a boyfriend, I will be alone my whole life”,’ he says.
‘I’m happy now that there are new treatments and I no longer have Hep C. That was a tough period of my life
‘I had depression about it… I had to find a solution.
‘The HIV and Hep C brought me back to my roots and my life. They helped me discover there’s more than just sex in the community and connection to other people is possible.
‘They see you and hear you and become more open to you.’
How to treat loneliness
Both Marcello and Prakash say you should try and surround yourself with people who you can reach out to if you’re feeling low.
‘Trust yourself that you have value,’ Prakash advises.
‘Get a bunch of good people around that you can talk with, and say “hey today I feel lonely, can we please talk or can you come over and watch TV with me”.
‘This is the most important step.’
Marcello started volunteering at an HIV support group in his area, which he felt helped him find a community.
‘I have a couple of friends who have HIV and sometimes we talk. It’s easy to talk to them because you know you are in the same boat and understand each other perfectly’.
Prakash also discovered meditation in his path to overcoming loneliness and depression.
‘When I meditated regularly, it brought me back to my feelings and my body. I trusted myself more and my self–love was coming out more,’ he says.
Speaking to a counselor or psychologist
But both men agree that getting professional help is also very important to combatting loneliness.
The HIV is: Just a part of me campaign suggests PLHIV get assessed at each HIV appointment for loneliness and mental health issues. If you are living with HIV, ahead of each appointment prepare the following questions to ask your healthcare team:
- What are the signs or symptoms of mental health problems?
- What changes can I make to my lifestyle or treatment choices to help my mental health?
- Is there anything I could look out for/monitor myself?
- What mental health support services are available to me?
- What can I do to improve my sleep?
Other tips to tackling loneliness and isolation
Loneliness can lead to a number of health issues, so it’s important to try lifestyle changes which could improve mental health.
Lifestyle changes including: eating well, being physically active, limiting alcohol and caffeine intake.
HIV is: Just a part of me recommends monitoring health and wellbeing through things like smartphone apps, online platforms and/or diaries.
Apps can help PLHIV to monitor their sleep. They can also track food, alcohol and cigarette consumption, and also to note down what exercise they’re doing.
Then PLHIV can take that information to their next appointment to make actionable goals with their healthcare practitioners.
The campaign also has a comprehensive site with information about mental health for PLHIV.
What is HIV is: Just a part of me?
HIV is: Just a part of me is a disease awareness campaign by Gilead Sciences designed to support people living with HIV to take positive steps to live a long, healthy life with HIV.
What is Digital Pride?
Digital Pride is the online movement, by Gay Star News, so you can take part in Pride whoever and wherever you are. Even if you are from a country where being LGBTI is criminalized or leaves you in danger – it’s a Pride festival you can be a part of.
In 2019, Digital Pride is tackling loneliness and isolation with articles and videos connecting LGBTI people. Join us by reaching out to someone who needs it. The festival takes place on Gay Star News from 29 April to 5 May 2019. Find out more.
This article was sponsored by Gilead.