Isolation, loneliness and caring for someone with schizoaffective disorder
I'm Rosario and I help care for my Mum, who suffers from treatment-resistant schizoaffective disorder*. I'm a Social Policy master's graduate and recently started working at Carers Trust. I hope to be able to give unpaid carers a voice and increase awareness around being an unpaid carer for someone with a mental illness.
Caring for someone who suffers from psychosis can be a very lonely experience at times due to the stigma around the illness which is often unpredictable and intangible. My Mum is a kind, sweet and creative person, who doesn't deserve judgement but is ill. It is upsetting to see her suffer so much through her illness and the devastating physical side effects of her medication.
It can even be hard to talk to loved ones about the illness for fear it's too heavy and dark. It's difficult to see my Mum experiencing paranoia, delusions and mood swings or hallucinations. On a good day, my Mum doesn't display symptoms of illness, which has led to a decrease at times in the support she receives from professionals.
It's scary because I don't know what will happen next. It can be hard to articulate, and this has given me long term, low-level, consistent anxiety.
I feel a sense of responsibility towards my Mum, knowing that I can make a difference to her wellbeing, and I am also her advocate. If she needs reassurance and love, I'll give it and perhaps most importantly I try not to judge her and I accept her. I'm also in tune with changes in mood and behavior and need to know quickly how to react in the right way in a crisis.
My life hasn't been typical partly due to my Mum's illness. To give an example, I've never been on a family holiday, something many people consider very normal. I've had to do many things alone where I would have liked more parental support. Despite this I have gained a lot; my Mum's illness has helped me to become more independent and to empathise more with others. It's helped me become who I am, learn more about human nature and made me more patient.
Overcoming isolation: being supported and speaking up
I hardly used to speak about my Mum's illness in my day-to-day life because I found it too painful and difficult to speak about. I also didn't know that I was a carer until 2019. I reached out to Carer Support Wiltshire that year after a particualrly bad episode of my Mum's illness and was helped by a lovely support worker. I met other young carers and young adult carers through activities. From then on, I saw my situation in a new light.
At this time, I'd taken time out from my master’s due to my Mum's illness and felt stuck and was worried I wouldn't be able to complete it. My anxiety over this was increased by an experience that happened during my undergraduate degree. I was told by a supervisor I needed to choose between my home and academic life; this was at a time my Mum was very ill in hospital and it had coincided with the end of year exams. Through Carer Support Wiltshire’s help, I was able to complete my master's and feel I had a future. My support worker wrote a letter to my university to explain how my caring role was impacting me as evidence. No carer should feel their caring role is a barrier to achieving their dreams.
At the start of 2020, I was invited to join a steering group at Carers Trust for young adult carers and later that year become the youngest trustee at Carer Support Wiltshire. These experiences gave me a voice and helped me feel comfortable speaking about my caring role. I had the opportunity through this involvement to speak up in meetings and express myself creatively through blog posts, creating social media content and being on a podcast.
It has been fascinating to hear the experiences of other carers and learn about how the right support can improve their lives. Another turning point was joining the fundraising team last October at Carers Trust. It means a lot to be trusted to make a difference.
How to feel less alone as a young carer
Seek help wherever you can, don’t keep it all to yourself. It’s helpful to be open about your situation and find others that can help you. This could be friends, family, teachers, university lecturers, employers, or a support worker.
Journaling can help you get all your thoughts and feelings out and a way of going inward to understand difficult emotions. It can also be a way to ask questions to help you know what help you need from others.
How you can help young carers and young adult carers overcome isolation
If you know a young carer or young adult carer check in on them, allow them to be listened to without being obtrusive. Tell them you are there if they need it and allow them to share what caring is really like. Ask them how you can help.
*Schizoaffective disorder is a condition where symptoms of both psychotic and mood disorders are present together during one episode. The term treatment-resistant refers to patients who have poor outcomes in their illnesses despite treatment.