Carer Story by Nerissa
"Over the years though, I’ve realised how important it is for me to be heard, to share my feelings and get the support I need."
When I met my now wife nine years ago, I had limited understanding of mental health. I had heard of people living with anxiety and depression but had never experienced it first-hand.
She told me she had schizoaffective disorder and PTSD. As a friend then, I felt quite helpless and didn’t know what to say. I asked questions and gave her the chance to explain things to me.
I often thought of what it’d be like to be in a relationship with her. Knowing she was someone living with a mental illness was a concern for me. What if we got together and it didn’t work, would she cope? If she got unwell, would I cope? Would we be able to leave if we wanted to? All valid questions when contemplating a relationship but her mental health added complexity. It took many months before I said yes. I needed time to know that I could commit to what was needed. When I look back now I guess I didn’t quite know a lot back then.
What helped us initially was ensuring we kept the lines of communication open. We were clear upfront that if we wanted a chance at things working then we’d have to lay it all on the table. The good, the bad and the often quite ugly. Being open and completely honest with each other was the only way we’d work through this.
Two months into our relationship, she had a serious motor bike accident. Our lives changed in a few seconds. Since then she’s had numerous surgeries, physical rehab and ongoing treatment which culminated in a below knee amputation. Understandably this took a toll on her preexisting mental health.
Living with someone with a severe mental health diagnosis can be extremely challenging. It’s complex and you go through a range of mixed emotions. Over the years I’ve felt extremely scared, helpless, sad, angry, guilty and at times very alone. But with that also comes deep empathy and immense love, care and concern for my wife.
Our couples therapy sessions have massively helped. We’ve had individual as well as relationship counselling. Initially I thought therapy was just her thing, not something I needed. Over the years though, I’ve realised how important it is for me to be heard, to share my feelings and get the support I need. Self-care is crucial and I’m still learning how to get better at this.
At times I feel a sense of resentment, but then I want to help my wife. I want to find ways to make things better, but so much around mental health is still unknown, which makes it scary and extremely frustrating. It’s been interesting to see people’s varied reactions to her physical health in comparison to mental health.
For example, we wouldn’t tell someone with a broken leg to simply get up and get on with their day. So how can we expect someone living with psychosis, depression or anxiety to just get on with things? There needs to be a level of patience and understanding. The same level of care you’d give someone with a physical ailment, and on some levels a lot more patience and understanding is needed.
It’s important where possible to try and view the condition as being separate from the person (which can be hard). When she’s severely unwell with psychosis and things get really difficult, I have to often remind myself that this is still my wife, the person I’m in love with and the person who loves me back equally. Even though that person isn’t really there in the moment.
When my wife comes through a period of being unwell, she often doesn’t remember a lot of it. Which for her is probably a good thing, but I’m left still trying to cope and come to terms with all that’s happened. The trauma for me is still quite real even after it’s passed for her. Needing to juggle those emotions is often challenging.
What I’ve found works (and what we continue to work on) is open and honest communication. Being able to share how we’re both feeling has helped us work through things individually and as a couple.
It isn’t easy, but if you want a relationship to work, you’ve got to be willing to put in the effort:
• Understand that the experiences can be different for each of you.
• Ask for help when needed, don’t be shy to say you’ve had enough or that you aren’t coping.
• Find people you can both talk to and get professional help.
• Build a support network around you, this might consist of family, friends, professional care givers, whatever works best for you both.
• During periods of wellness, spend time doing fun things together but also time apart on things you each love.
• Make good memories that you can hold on to when things get tough.
• Keep the lines of communication always open.
• Be realistic about what you can expect from each other and from your relationship.
As we continue to work through things, we remain committed to our relationship and feel positive about the future.