Dear Karumah Community,
As you are well aware, Australia and the rest of the world are currently facing the COVID-19 pandemic. It is a rapidly developing situation which in addition to posing a health risk to ourselves and others, is having significant impacts on our day-to-day lives. It is a very anxious and distressing time for many of us and there is a lot of uncertainty at the moment.
We are a community who were bought together by a pandemic, so we know better than anyone how important it is to work together and support each other in these difficult times. It is very normal for a situation like this to bring up negative feelings or painful memories which can be an extra stressor and require us to take extra care of ourselves. We know that these challenges bring out the best and the worst in humanity, but we also know we can survive them.
While our upcoming events have been cancelled and we encourage everyone to practice social distancing and stay home unless they absolutely have to go out, Karumah is still here to support you.
Our new manager, Marette, and case manager, Jess, both started this week and are settling in well. Jess will be making contact with everyone over the next week or two to introduce herself and check in. If you need extra support due to COVID-19, please let her know or contact us directly via phone or email.
Aly will be arranging some ways that we can connect as a community during this time, so look out for an email about that next week sometime.
In the interim, Aly has put together a COVID-19 resource list with lots of important information about the virus itself, COVID-19 and HIV, social distancing, isolation, mental health, testing, reliable news sources and some great ways to stay connected and pass the time at home. It will be regularly updated and sent out again as the situation changes and develops.
It is a PDF with active links, it will work best on a computer screen but will also work on most smartphones (you might need to zoom in to tap the links). It’s divided into sections to help you find the information you need. If something isn’t covered or you’re having trouble accessing the document, please email Aly at firstname.lastname@example.org or text/call her on 0411 060 492.
Aly and Jess will be working from home most of the time, in line with the latest government recommendations, so the best way to contact them is via email or on their mobiles:
Jess – email@example.com – 0411 060 863
Aly – firstname.lastname@example.org – 0411 060 492
We will do our best to support you during this difficult time and ask that you make every effort to protect yourself and others from the virus so we can get back to our normal lives as soon as possible.
Stay Home & Stay Safe,
Community Support & Promotions Officer
Sunday, 17th of November, 2019 – The Exchange, HamiltonRead more
Phoebe Moloney – NOVEMBER 17 2019 – 7:00AM
STORIES: Karumah’s community and promotions officer Aly James with the service’s new book Karuma: 30 Years of Care. Picture: Supplied
After thirty years of supporting residents of the Hunter region with HIV, staff at Karumah say they are grateful to be able to tell a very different story about the virus to their clients and the community.
Whereas once the disease was a death sentence, early and ongoing medical treatment can now stop the disease’s progression and maintain the viral load at an undetectable level – at which point sufferers can be confident they won’t pass it to others.
“You have a good chance of living a very normal life,” said Karumah case worker Catherine Conaghan. “And it won’t stop you from having a family. I think the reality is completely different to what a lot of people think.”
To celebrate its 30th anniversary, the Newcastle not-for-profit service is launching a book on Sunday sharing 30 stories from its clients past and present of love, loss and survival.
PASSIONATE: Catherine Conaghan is a case manager at Karumah Positive Living Centre. Picture: Max Mason-Hubers
The support service hopes to illustrate the diversity of people the disease affects in the Hunter, which Ms Conaghan says includes men and women of differing sexualities and backgrounds. “Karumah: 30 years of Caring” aims to humanize those with HIV, as a large part of the service’s work in 2019 is trying to counter the impacts of stigma and discrimination on clients’ lives.
“We hope that this project can not only preserve the history of Newcastle’s response to the virus but also show that HIV affects people from all walks of life,” said Karumah’s community and promotions officer Aly James, who collated the stories.
“Above all, we want to celebrate the uniqueness and resilience of our community.”
One client of Karumah, who has asked to remain anonymous, said when he was first diagnosed with HIV 10 years ago he thought he was “going to die”.
“I thought I wouldn’t have a future and I was worried about my family and friends. Luckily, I quickly learnt that is not the case,” he said.
The Lambton resident sought treatment “right away” and, with daily medication, achieved an undetectable viral load within months.
Ward 11 at Royal Newcastle Hospital decked out for Christmas just days before the 1989 earthquake. Picture: Archival image collected by Pauline Dobson and Richard Riley
“The virus never really had a chance to progress so there’s been very little impact on my overall health, thankfully. This also means my work has been largely unaffected,” he said.
“Because I’m undetectable I cannot pass HIV onto another person. However, dating is still hard because there is so much stigma.
“I wish people would come from a place of understanding instead of fear.”
He said meeting others with HIV through Karumah had been “life changing”.
“I have made friends who I don’t have to explain anything to,” he said.Karumah is hosting a celebration for the launch of the book in Newcastle on Sunday. Those interested in attending can email email@example.com for details of the event.Read more
Taken from the ABC Newcastle website:
Bowling alleys, the Grim Reaper, intense scary voice – the HIV educational ads from the 1980’s are still well known in the Australian community.
But a lot has changed since then.
Kia Handley speaks with Aly James, a Community Support & Promotions Officer from Karumah, and Mathew Vaughan, Acting Director of HIV and Sexual Health at ACON, about what life looks like now for people living with HIV.
Duration: 13min 37sec
Broadcast: Wed 2 Oct 2019, 9:00am
You can listen to the interview here: https://www.abc.net.au/radio/newcastle/programs/mornings/hiv/11567030?fbclid=IwAR2VHzY-6g301OoXKMo5qdFOgzV6WTZvNDG5JbjQhmt7af8VeWYbi725S30Read more
This post originally appeared on Avert.Org: https://www.avert.org/living-with-hiv/health-wellbeing/mental-health
• It’s normal to have ups and downs when living with HIV.
• Being mindful of your worries, and seeking support from others, is a great way of maintaining your mental health. Remember you’re not alone.
• If you think you are suffering from depression, your healthcare professional may be able to help with counselling or antidepressant drugs.
If you’re living with HIV, you may have been given plenty of guidance and treatment on how to look after your physical health, but looking after your emotional and mental health is just as important.
There are many different types of mental health issues, such as depression, anxiety disorders, low self-esteem or personality disorders. They can affect anyone and everyone, but living with HIV can cause additional worries that may make you more likely to experience a mental health problem.
Here we look at ways to maintain good mental health and ways to tackle some concerns you might be facing.
While I no longer dwell on the past, I do have days when I feel depressed because of the whole situation. But then I look at my life and the things I have achieved, and that makes me feel better and more determined to do something with my life. – Kain
I’m worried about…
Living with HIV
From learning you are HIV-positive, to starting lifelong treatment or deciding the best way to share your diagnosis, you may have worries that are specific to living with HIV, which may in turn affect your mental wellbeing. We’ve got lots of information in our living with HIV section to help you with this.
Stigma and changing relationships
You may experience stigma and discrimination from people who don’t understand HIV and have negative views about it. This can be very hard to deal with, especially if it comes from people you are close to and/or if these relationships change as a result.
It can help to have information about HIV to hand – this way you can explain what it means to live with HIV today. Sharing the facts about how treatment has now made HIV a manageable, and even untransmittable, condition can help to dispel some of the common HIV myths and assumptions that some people may have.
Also, you may find comfort in talking to people who already understand the reality of living with HIV, such as a healthcare professional or support group.
“It’s getting easier as time passes, as I can explain that I’m okay and doing well on meds.” – Benoite
Antiretroviral drug side effects
As with most medication, there are some potential side effects that come with taking ARVs. Some people experience increased feelings of anxiety or depression after starting treatment for HIV, and if these are ignored they can be debilitating.
If you’ve had mental health problems in the past, it’s helpful to tell your healthcare professional when discussing treatment options.
Don’t hesitate to contact your healthcare professional if you think you’re experiencing depression and that your ARV treatment may be affecting you.
How can I look after my mental health when living with HIV?
Recognising the way you’re feeling is the first step to managing your emotional wellbeing when living with HIV. Here are some tips to help you manage:
Know what to look out for
Some people who experience mental health problems have trouble taking their HIV treatment correctly and may miss doses, skip appointments or not eat a healthy, balanced diet.
Don’t hesitate to reach out to someone if you find that any of these feelings are overwhelming or last for longer than two weeks:
- Feeling depressed, hopeless, ashamed or guilty most of the day and almost everyday.
- Feeling constantly fatigued/tired.
- Overeating or loss of appetite and/or weight loss.
- Finding it hard to concentrate or sit still.
- Suicidal thoughts.
Your healthcare professional will be able to find you the right support for you. They might suggest you switch your ARVs or take additional antidepressants if these symptoms persist.
Talk to family and friends
Sometimes it’s hardest to talk to those you love because you might be scared of their reaction or of upsetting them. However, they could be the greatest source of help and support because they already know you and can help you to feel less alone.
“I do talk to very close friends about it – it’s important to have at least one person who isn’t a clinician that you can talk to because they are helpful.” – Kain
Find support groups and helplines
If the support of family and friends isn’t possible, you might prefer to talk about your feelings with someone at a helpline or support group – a healthcare professional can help you find one.
The fact that you don’t know these people personally may help you to talk honestly about your feelings and living with HIV. In return, they can offer you practical and emotional wellbeing advice.
“Family are a great support system to have through it all… but if you don’t have that, there are numerous support groups that work with HIV infected persons.” – Curt
Share your feelings with your healthcare professional
Your healthcare professional isn’t just there to give you treatment and check your viral load. They also need to know if you’re experiencing other difficulties that could affect your overall health, such as mental health problems.
They may suggest treatment that includes antidepressant drugs or talking therapies, such as counselling or cognitive behaviour therapy (CBT).
Find some sort of positive support from the time you find out until the time you can rely on yourself. You are not the disease – it is a part of you. – Curt
Exercise and staying healthy
Getting enough exercise, sleep and nutrition is important for a healthy mind and the benefits can be even more significant for anyone who is living with HIV.
Many people find that changing to a healthier lifestyle helps with some of the symptoms and enables them to get some control back in their life. Drinking too much alcohol or being dependent on drugs could also have a big impact on your mental health and the success of your treatment.
Don’t be too hard on yourself
It’s normal to have negative feelings and feel fearful about what the future holds.
Often it’s about learning how to cope with feelings of uncertainty and, in many cases, this can be hard to do without the support of loved ones or a mental health professional.
“I’ve learnt a lot about myself since my diagnosis and how I deal with things; I’ve become more headstrong and I don’t give up very easily.” – Kain
Do things that relax and interest you
You may lack interest in activities that you used to enjoy, but keeping active is one of the best ways to break the cycle as it lifts your mood and energy levels, increases your appetite and improves your quality of sleep.
Even small activities such as a walk around the park, 10 minutes of yoga or some gardening may help to relax and distract you from any negative thoughts.
Photo credit: ©Unsplash/Llywelyn Nys
From the NAPWHA Facebook page:
June 5th is HIV Long Term Survivors Day and we commemorate and celebrate the lives, bravery and advocacy of those who paved the way for every facet of the HIV response.
“To all long term survivors out there today we are acknowledging the major ups and downs you have been through on your journey to stay alive, and with as much quality of life as possible. You are respected within the HIV community and beyond for the challenges you have faced, including the grief and loss that has been so much a part of our lives in the past. Stay strong and support each other. We are each other’s heroes.” – David Menadue
The Forgotten Generation?
Modern advancements such as U=U have redefined what it means to live with HIV. But, as Ross Duffin reports, for the long-term survivors the lived reality is not so rosy. Read More: