This story is part of a series written by mental health carers in which they share how they became participants, influencers and leaders in the NSW mental health sector, in hopes of encouraging other carers to do the same. See the full series, and learn more about the project.
I became a carer in 2012 when I was 21 years old; however, at the time I had no idea that’s what I was. I had entered into a relationship with someone who had diagnosed clinical depression and obsessive-compulsive disorder (OCD). For the first two years of our relationship she was not on medication, and it was a really difficult time. She would cry constantly for no reason; self-harm; experience mood swings such as bursts of anger, moodiness, or anxiety; and perform obsessive rituals such as brushing her teeth ten times a day, repeatedly checking taps and gas stoves were off, refuse to sleep with any appliances plugged in for fear they would explode during the night, and many more. As her partner, she would involve me in these rituals by asking me to check things for her and texting me throughout the day for reassurance on the rituals. She would not disclose how poor her mental health really was to her family and friends which meant that I was the sole support taking care of her mental illness. At the time, I did not know I was a carer and that there were services and supports available in the community to support and educate me in my role, so I struggled for a long time and my own generalised anxiety disorder - which I had been self-managing through various wellbeing methods for years prior - began to worsen.
In 2015 my partner decided to go on medication, a high dose of antidepressants. There were side effects to the medication but on the whole, it significantly improved her ability to function in day-to-day life, and be able to start enjoying life again. The mood swings eased off, and the depressive episodes became less frequent. However, because she did not wish to receive treatment for her OCD, the rituals continued. She developed excoriation (skin picking) disorder and would spend hours in the bathroom making her skin bleed until I’d find her and stop her. My caring duties changed where I was now making sure she took her medication every night (I had an alarm on my phone that went off every day at the same time) because if she didn’t take it even for one night, she would go into immediate withdrawals (vomiting, severe depressive episodes, excessive sweating) during which I would take care of her. I made sure to cook specific meals that she needed while on the medication, such as red meat three times a week. I would hide all the sharp objects in the house that she would use to pick her skin, I would monitor how long she was in the bathroom for each time and if it was too long I would go in and find her picking her skin and help clean her up. My life at home was constant worrying for her wellbeing and doing what I could to support her. I did not realise that by limiting her exposure to her intrusive thoughts, I was enabling her and contributing to the compulsive behaviour that she engaged in to “neutralise” the intrusive thoughts.
Being part of the LGBTI community didn’t make it any easier. I constantly faced ignorance from mental health service providers and GPs. It was so frustrating that sometimes I would pretend to actually be my partner over the phone when making appointments to avoid awkward pauses and ignorant comments from frontline staff. There is some serious LGBTI education that needs to happen in mental health services in NSW.
Later on, in 2015, I started working at a carer non-government organisation. It was by complete chance that I happened to get this role in a carer organisation and it was through this opportunity that I learnt that I was a young carer, and began identifying as such. It became much easier to continue caring once I educated myself more on the mental health system, and what is available for families and carers who support someone living with a mental illness. I started attending workshops such as one on OCD where I learnt that by participating in my partner’s rituals, I was actually enabling them. I started talking about my experience as a carer more, to my friends, to my family and to my colleagues. What I realised is that while most people don’t talk about caring, carers are everywhere!
For the five years I was with my partner I was always a carer, but what did change following my employment at the carer organisation, firstly as a Project Officer and now as a Program Manager, was my attitude towards my caring role and a newfound passion for helping other carers. Learning more about the needs and experiences of other carers made me feel empowered in my own caring experience.
The advice I would have given myself back in 2012 would be to:
- Learn as much as you possibly can about the mental illness and what it is like for the person experiencing it.
- Attend as many workshops as possible. There are a number of free workshops for carers from great organisations across NSW. These are a great way to meet other carers and connect. Caring can be very isolating and lonely; it’s important to talk about what is going on with people who understand it.
- Take care of yourself and your own needs. It can be hard as a carer to remember to put yourself first above the person you are caring for, but your physical and mental health is just as important. It’s like the safety procedure on planes: you have to put your own oxygen mask on before you can help someone else with theirs!
- Involve other support networks like family members and friends in the caring. Being the sole person responsible, especially while young, can significantly affect your own mental health. It’s okay to talk about it and get the support you need.