Carers have said that listening and talking to people who have had similar experiences can be really helpful. We would like to hear about your experiences as a relative or carer of someone with mental health difficulties. Please email your experiences to firstname.lastname@example.org.
A mother whose son has had psychosis and substance misuse for 10 years:
"Recovery is very important, for me it means never losing hope, whatever happens. With my son I was hoping that the meds would work, and they've not worked for him, it felt like the end of the road at the time. When I feel down hope is what helps bring myself up. I've been here 10 years now. The first year was very bad because I had no knowledge about mental health, I couldn't understand what was going on. Getting in touch with a carers network changed everything: people with similar experiences who listened and provided information. Before I wanted control over everything. I've had to let go of that.
When your children are babies you have hopes and dreams for them, you've still got those dreams but you have to let go of them. Acceptance of how they are is very important. I try to focus on the here and now, what's happening this moment. There are special moments when my son's well. When he's unwell I just listen more. I used to argue with him when he was unwell, but now I just listen to him. You can learn by listening and this reduces stress. Things are changing for me now and it's had a positive effect on my son, he wants me to be happy, and I'm starting to feel good about myself again. I am pleased to have been involved with the website as for me recovery is all about increasing our knowledge about mental health and carers supporting each other".
Mother whose son has psychosis:
"You carry on doing what you're doing and there's no time for recovery of yourself from the stress of caring. Because mental illness is a constant situation, you can't make any plans and you walk on eggshells all the time. It is like a living nightmare and there are times when I'm just really upset. I suffer high anxiety and stress every day and subsequently I neglect myself, which has caused my health to deteriorate. I struggle to keep up with day-to-day practicalities, domestic chores pile up and I'm constantly battling to keep my head above water. I still find it difficult to come to terms with being a carer.
Sometimes, I just want my life back and to be myself. Carers need to be seen as individuals, as everyone's experience is different. We need to have the support to get our lives back, whether that's from friends, family or services. I feel a great need to share with the world my inner pain and for people to try and understand".
Parents whose daughter has psychosis:
"For a long time life just seemed 'frozen', like everything was put on hold. When our daughter first went into hospital it felt almost surreal like 'was this really happening?' When I thought of schizophrenia I thought of people who were dangerous, like I'd seen on the TV. How could this be happening to our daughter? When I look back now I can see that we were all in shock for a long time. Things that we used to enjoy like going out for dinner or going to the cinema became impossible and we stopped seeing our friends. It was too painful to talk about our daughter with people who didn't really understand, it felt like a raw nerve when her name was mentioned. I secretly wished people wouldn't ask about her, and then I would feel terribly guilty for thinking that.
People don't really understand mental health problems like psychosis. To this day I think that some friends and family still don't understand what we've had to deal with. That's the difficult thing, feeling cut off from people, and trying to cope at the same time. I started to ask questions about myself, was I a bad parent? Was I to blame? These thoughts would go round and round in my head for hours. Then I would be hit with a barrage of grief and loss. All the hopes I had for her: her career, her potential relationships: all seemed to be lost. I did lose hope. There has been no miraculous improvement and some pretty awful things have happened. I still worry a lot about the future and what will happen to her when we're not around. I try to think about the small steps of progress that have been made, for example she has retained her interest in art and has recently started attending a weekly art group, and I have been able to go back to work part time - these small things help me get by".