No one would ever know I was a carer unless I told them

09/06/2020

There are an estimated 13.6 million unpaid carers in the UK supporting disabled, seriously ill or older friends or relatives, a number which has increased significantly due to the pandemic. For Carers Week 2020, we share Theresa’s experience of being a hidden carer

If I had to summarise my experience of caring in one word, it would be this: guilt.

I'm a carer for my brother, who was diagnosed with schizophrenia more than twenty years ago. His diagnosis had defined his life and, to a large extent, mine too. 

I am what is sometimes called a 'secondary' carer. This means I do what I can to support him emotionally, to give him space to talk and be heard, to help him think and work through issues like applying for social housing and decisions about his treatment. Like countless other carers, much of the help I give is invisible. It takes up a huge amount of emotional energy and a not insignificant amount of time, and it weighs heavily on my mind 24/7, but no one would ever know I was a carer unless I told them. 

My brother has been in hospital, on and off, for many years, a long distance away from where I live. This, combined with the COVID-19 lockdown restrictions, means most of the support I provide takes place over the phone. I often find our phone calls challenging. It's not unusual for me to cry afterwards.

"Why do I cry? I cry because my brother's behaviour can sometimes be challenging and upsetting. But I also cry because I can't make everything better for him."

I cry because there is little in his life that brings joy. Because he spent a significant birthday alone in hospital, without a single friend or family member. Because years and years of revolving-door hospital admissions mean there aren't many friends left. Because his dreams of what he would achieve in life have been shattered. Because I am grieving for the life he might have had, were it not for the impact of his illness and, just as importantly, the stigma and exclusion he has endured as a result. I cry because I am exhausted.

Hence the guilt. I wish I could do more. But I don't know that I would actually have the energy or resilience to do more, even if I could. Alongside the care I provide for my brother, I'm also the primary carer for my partner, who is disabled, as well as managing my own serious chronic health problems. The smart thing to do is to look after my wellbeing - as they say, put your own oxygen mask on before helping others - so I know I'm doing the right thing by putting some boundaries around my caring role to look after my own mental health. But the guilt - the sense I could or should be doing more - still lingers.

I also feel guilty for the sheer fact of living my life - for having a job, a relationship, and a place to call home. Lockdown may have given us all just a small taste of what life might look like when our freedoms are restricted, as it is in a much more significant way for people like my brother who is detained under the Mental Health Act.

So, no matter how hard I find my caring role at times, and despite the support I have accessed to manage my own mental health as a result, I feel guilty that my brother's life is so much harder.

For many years, I didn’t talk to anyone about my brother's mental health or my caring role because of the stigma attached to his diagnosis. But once I started opening up and reaching out to my friends and colleagues, it felt like a huge weight lifted from my shoulders. I found that a number of colleagues were in a similar position, and like me had been reluctant to be open about it. Talking to friends and fellow carers about my experience has been really powerful in supporting my own wellbeing and making me feel like I am not alone. Simply talking about it has made a huge difference to me.

Although it seems like a thankless task at times, I love my brother deeply, and being there to support him not only makes his life a little easier, but also gives me confidence that he knows he is loved.

If you would like more information about being a carer for someone severely affected by mental illness, our advice section for carers has all you need to know about your rights, benefits and getting respite help. Click here to visit our carers hub.

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