Today is World Mental Health Day and it’s prompted me to write this post about my families experience with mental illness. This is not an easy post to write as it is very personal. I’m a bit nervous to push the publish button. But I think it is important that we are more open about mental health and maybe talking about what it means to me will help in a tiny way.
My sister Katharine is three years older than me. She is sensitive, quiet and much taller than me. She has a very creative streak and loves patterned socks and nail varnish. For a long time she has struggled with mental health problems. Over the years things have got progressively worse to the point that she could no longer work. She moved back into my parents house a long time ago.
We knew that things were very wrong. We didn’t know which way to turn and my sister was very suspicious and reluctant to seek medical help. The GPs service was very basic. My sister was prescribed anti depressants but we had no real insight into what was really wrong and the best way forward.
We got to a really scary place. Scary for Katharine and for us. My sister was seeing things, talking about things that didn’t make sense. On some days she was very withdrawn on other very erratic and angry. She was living in a strange and dark world that we couldn’t understand or access. She was feeling very paranoid and was often unclear with the basics of what day it was and what was going on. We muddled through trying to help but basically clueless what to do.
Things came to a head in December 2013. My sister came out in a angry red rash and was having difficulty breathing. This physical problem was a reason to get her into hospital but more importantly it was a route into getting the serious specialist attention needed for her mental health. She was admitted to a secure mental health facility.
I’m a bit ashamed to say I didn’t tell my friends or colleagues what was going on. A couple of people knew that my sister was in hospital but not much more than that. I didn’t really know how to explain things to them, partly because I didn’t understand them myself and partly because I was worried about their reaction and that they would judge my sister and my family. I realise now that this is ridiculous and this is exactly how the stigma around mental health is perpetuated.
I was really nervous the first time I went to see Katharine. I didn’t know what to expect about the place where she was being treated and what state of mind she would be in. Katharine was in reasonable spirit but a bit jumbled. I showed her pictures on my phone of my three children and gave her lip balm. We chatted a little bit about what she had done that day. I got a bit of a glimpse of my sister coming back into view. The next time I visited was a really bad day. Katharine was very restless and jittery and erratic, she left the room a couple of times. The staff told us she was not sleeping.
My mum and dad were so amazing. They were at the hospital every day, met consultants and held us all together.
On December 30th we got a solid diagnosis. It was serious. I’m not going to go into detail here, it’s not my medical information to share. What I can say is that we were reeling trying to get our heads around things. The Mind charity website was a very good source of information it filled in some of the blanks that we had been left with after the consultant met with my parents. We could slowly read through things. There were many sentences that rang true and in a way explained what Katherine had been going through.
I felt it was really important to explain to my daughter who was six at the time in the best way I could that auntie Katharine was ill and a little bit about her condition. If we are ever going to break down the stigma of mental health then this is one of the key things we need to crack. That today’s children don’t hid mental health problems, are not scared or confused like we were. To this end I took all of my kids to see my sister in hospital. My boys were very young at the time (noisy two year olds) and I can understand that they are unsettling at the best of times. My daughter sat with Katharine and showed her her Rapunzel doll and some other things she’d got for Christmas.
It’s been a long process. Gradually my sister was allowed to take some supervised trips out. Then have some overnight stays back at home and eventually she was discharged. She takes some fairly full on medication and will have to for life. There have been a few set backs since but she has a support system in place now of people who understand and know what may and may not help.
I feel like to a large extent I have my sister back. We now understand more about what Katherine needs – a clear routine. She doesn’t cope well with change or the unexpected. She is still not able to work. My mum, dad and sister come to stay with us for one day every week and my sister has found her groove as auntie to my kids. Some days are better than others. There are a lot of days where you would have no idea that there are any issues and a few bad days as well, but these seem to be fewer now.
This experience has taught me a few things. Not talking about mental health is bad for everyone involved, people who have mental health issues and the people around them. This silence delays getting help, it adds confusion and fear when why you need is information and support. I am a bit wary of how well our health system treats people experiencing mental health difficulties. I think we have seen both ends of the spectrum very good specialist help and not very effective GP care.
Statistics suggest that one in four of us will need help with mental health issues at some point in our lives. Let’s aim for a day where mental health is talked about in the same way as physical health, openly, honestly and not in hushed tones.