1800 244 735

Isolation tips and support for young people and their families 


As everything changes around us day by day, in ways most of us have never experienced before, we are feeling a lot of uncertainty – in our own lives, for our families, friends and for the world in general. In a situation like this, both the known and the unknown can cause increased levels of worry and stress, especially for those in families affected by Huntington’s disease who are already coping with a lot.

All 0f this uncertainty and forced changes in the way we live our lives means that actively looking after our mental health is more important now than ever before. With this in mind, Huntington’s Youth connection Program is amping up its service to provide help for you and your family. Whether it be counselling online via skype, Zoom, or Whatsapp, a phone call, or some online group support; Youth Connection Program is here to help.

We are also offering a structured counselling service for other family members as well as for you. If your parents or carers are not coping so well, let them know they can now access Huntington’s Youth Connection counselling services. We would also love you to reach out to us and tell us what you need and how that might work. Creative ideas are always welcome!

What type of ‘isolation’ personality do you have?

 We are going to be spending much more time by ourselves. In our homes either alone, with housemates, partners or our immediate family members. There are some things to think about here when working out a plan around how  best to deal with this. The first is thinking about how you as an individual cope with alone time? Are you the kind of person who loves nothing more than a weekend with  a good book or Netflix, or are you the kind of person who can’t bear to be alone or without something new and engaging to do, constantly arranging to meet up with friends and family and always on the run? We all  fit somewhere along that spectrum. For those of us at the busy end, this period of isolation may require more hard work and active planning to maintain good mental health and feel OK.

The first is thinking about how you as an individual cope with alone time?

There’s also the question of how you’re coping generally in life. It’s pretty safe to assume that if you’re a person who already manages anxiety, stress and sadness day to- day, this will be a time when you could expect a spike in this. If this is you, perhaps making an appointment with us for some counselling could be a good idea, or letting a safe, supportive friend know that you’re worried you might not cope so well.

Is your home a safe place?

One thing that can be very real for some people in isolation is that home might not be a safe place. it might mean being confined with someone who is physically violent, emotionally abusive or manipulative in ways that make your mental health suffer.

Regardless  of  what  is  going  on  in the wider community, your personal safety is still the most important thing to take care of. anytime you feel unsafe and you need to leave the home, do so immediately. even if you are sick or think you might have been exposed, leave the home, find somewhere safe and call 13HEALTH. let them know your situation and they will help work through a solution with you.

The police are also just as available to you as they always have been, call 000, 24 hours a day if you feel unsafe. Another helpful number here is DV connect on 1800 811 811, they may be able to help find you alternate accommodation.

Isolation and HD

This kind of isolation can be especially hard for HD families on a number  of levels. as restrictions around visits to people in nursing homes and care facilities increase, it might be a good time to start a conversation with the people around you about how you might stay more connected and cope emotionally with not being able to visit as much or perhaps not even visit at all during this time.

As our governments and health professionals get further into trying to manage the spread of this virus whilst also keeping vulnerable people safe; nursing homes and care homes are likely to need to shut down to visitors altogether for periods of time. This isn’t going to be easy for a lot of people.

Another way HD can impact on isolation is if you are a young carer. caring can often lead to feelings of isolation at the best of times. taking away the ability to use the outside world to escape and recharge can make things really hard. Please reach out and have a chat to us about how you might manage this. It’s a big ask and you’ll need all the help you can get at this time.

How will we cope?

It’s super important to actively manage our well-being by being really mindful of what we need to make ourselves feel  OK.  this might be having a think about what foods we eat, what time we go to bed and sticking to a schedule so we sleep well, making sure we’re connecting with people the best we can online, staying physically fit, reaching out for help from friends and family and contacting whatever services you need. Police, Lifeline  (13 11 14), Huntington’s Youth Connection Program and further professional  support are all still going to be available. Another thing to think about is how you manage  your expectations of yourself. emerging from this experience having watched a good chunk of the Netflix back catalogue whilst maintaining a relatively OK level of mental health is actually pretty good.

In spite of how many online art/writing/language courses we do (or attempt to do) we probably won’t write any screenplays and that’s OK. Our job here is to work together to get through this and it’s going to help us feel good if we don’t put too much pressure on ourselves to always use the time as well as we imagine we could. It’s a stressful time and no one is expecting us to be at our best.

It’s also important to remember that it’s OK to be really upset about all of this – about the really big things and the smaller things. From the state of the world to missing out on important events in your life. Not being able to see your friends or family and not being able to do anything you’ve been looking forward to can be really upsetting. Give these feelings space to come out. they are all valid even with the big dramatic stuff we see going on in the world.

We will get to the other side. Please reach out for help. connect with us and remember the important difference between social isolation and physical isolation. We can’t be near each other physically, but that doesn’t mean we should be isolated socially. connect online, chat, check in and get some counselling if you need to. all of these small things make a difference to our mental health.

if you are a child, teenager, parent, young adult or teacher and would like to access this service of receive more information on our youth program, please call Amy at Huntington’s NSW ACT on 9874 9777 or 0499 031 231 or email [email protected]


Search for more articles




Position Statement: What we don’t need to prove but need to do in multidisciplinary treatment and care in Huntington’s disease

Abstract Background Huntington’s disease is a complex neurodegenerative hereditary disease with symptoms in all domains of a person’s functioning. It begins after a healthy start in life and leads through the relentless progression over many years to complete care dependency and finally death. To date, the disease is incurable. The long progressive complex nature of ... Read more

National Conference recordings

In May 2021 Huntington's NSW ACT hosted the national conference. This conference was virtual due to the COVID-19 pandemic. There were four key themes for the conference - achieving quality of care; achieving better policy outcomes; achieving better consumer outcomes; and research update.

Medical ID card

Did you know that we offer free Huntington’s disease identity cards? They provide information on HD and have space for emergency contact details. The cards can be attached to a lanyard to help others understand, or kept in a wallet in case of emergency. If you or someone you love would like a HD ID ... Read more

Carer Emergency care plan

The Carer Gateway have created an electronic template for carer’s to use and the latest version can be accessed here. An emergency care plan makes it easy for someone to take over from you in a hurry. It has all the information about the person you care for in one place, so you can get ... Read more

Australians need more protection against genetic discrimination: health experts

Authors: Jane Tiller and Paul Lacaze Published: October 5, 2021 Source: The Conversation   Excerpt: Genomic testing — the ability to read an individual’s genetic code and identify their risk of conditions such as cancer — has opened up huge possibilities in personalised medicine. But it has also introduced serious ethical challenges. Particularly, there is ... Read more

Normalising life at risk of Huntington’s disease. A qualitative study of backgrounds and coping strategies of fears of genetic discrimination

Studies in the sociology of genetics have shown how living with a predisposition to a genetic disorder often comes with significant psycho-social burdens and struggles. One of these struggles is the fear of genetic discrimination. Despite genetic non-discrimination regulations, research shows people still worry about being subjected to genetic discrimination. This article adds to this existing body of literature by showing why people still worry about genetic discrimination and how they cope with these worries.