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28 July 2022
Salvos Magazine has recently spoken to different people experiencing social isolation. These people come from all walks of life and are often not seen, or known about, in their communities. Below we share the story of Di, who cares for her adult son.
Salvos Magazine: Could you share a brief overview of your role as a carer?
Di: Over the past 26 years, I have been a carer to my son Nicolas who has severe cerebral palsy, ASD, OCD and anxiety.
SM: Has being a carer contributed to feelings of social isolation?
D: Yes! During the first five or so years after my son was born, there was very little support. Standard mothers’ groups were emotionally not suitable and unintentionally very judgmental (such as parents talking about milestones and similar). We also had a lot of therapy and specialist appointments in those early years, which took up a lot of our time and left little time or energy for making friends. Once my son started in a special needs school, support and shared experiences increased along with friendships, but there were still times of isolation as we were significantly restricted with access (he was in a wheelchair at four years old) and social invitations.
We found many of our old friends were unable to relate to our new situation, and rather than try to help/learn/support, they ignored us. Family had a slightly pitying attitude, which was at times also unhelpful.
SM: How would you describe what it’s like to be socially isolated?
D: Desperately lonely. Feelings of worthlessness and hopelessness were normal to the point where I would eventually welcome being on my own rather than struggling to fit in.
SM: What impact does being socially isolated have on you mentally, emotionally, spiritually, physically?
D: Feeling socially isolated was very debilitating. I have suffered from severe depression/ anxiety on and off over the last 20-plus years and was once hospitalised as a result. I have felt rejected and judged and made to justify my situation and provide personal information that others would not have been expected to supply. My weight has fluctuated, I have struggled with alcohol abuse, and at one point left my partner as I felt even he didn’t understand.
Spiritually, I have only come to know Jesus in the last 10 years or so, and I feel that has been a big benefit. I now don’t feel so alone or helpless, and I have a wonderful group of supportive and encouraging ladies who I have met through church.
SM: What are some of the biggest challenges in your current circumstances?
D: At the moment, I am doing well. My son moved into supported accommodation nearly three years ago and while that is still very hard to deal with, it has allowed me to reconnect with others and even start part-time work. While I currently don’t feel socially isolated, there are times when dealing with my son’s ongoing issues is isolating – mainly because these issues are so often misunderstood. We are also often perceived as ungrateful as he receives a generous funding package from the NDIS (National Disability Insurance Scheme), but there are still issues around the equipment and other necessities that he requires.
SM: What help or support would assist you in what you are facing?
D: I think non-judgmental phone support would be great, with the possibility of follow-up or referral to other services. I did call phone counselling at certain times in the early days but that didn’t offer follow-up support.
SM: What would you like people to know about socially isolated people?
D: I think education is great. Carers are often overlooked as they appear to be well off or involved when they are actually struggling. I think carers are a very misunderstood part of our community, and more awareness would be helpful.