Psychosis: how my family helped me

I asked four members of my family to write a paragraph or so about how they helped me when I was experiencing an episode which hospitalised me for at least 2 months.

It was 1998 and I was 24 at the time. I was in the middle of teacher training, doing my Secondary PGCE. Reading the accounts below, I can see how my breakdown was so difficult for all of us. In my view, it was about me reframing myself due to chemical imbalance, the challenge of family expectations and finding and valuing my ‘self’.

Mum wrote:

When you were hospitalised, I felt I needed information. Psychosis? What was that? I began to search the Internet. I just wanted you home. It was a bit like evening homework. I wanted to learn about mental illness.

The nursing staff and consultant helped us understand more about your condition but you were in hospital for months and months and, because you were over 18, there was the added issue of patient confidentiality so we could only know what it was once you were well enough to be told yourself. I prayed for you daily. Peace, calm and gentleness needed to be the keys. It was a massive learning curve to cope with. It was still your life though, and you were the only one who could live it. No one wishes to be pampered forever do they?! I’ve always wanted to stand alongside and support you but not take over.

My response to mum

When I was growing up, we had a good mother and daughter relationship and friendship. When I had such a serious psychotic depression in ’99, my relationship with you became very challenging because I thought that the anti-psychotics you were giving me were poisonous.

I was put in hospital when I ran into town in my nightie believing I was going to have a heart attack and was damned by God. That was horrid for all of us.

When I arrived on the ward, I was assessed immediately and thought it was a different world and that I’d never be on earth again. I thought there was a high possibility that I could be in the afterlife and I was really happy about that. I remember saying I didn’t want to be with you in a really horrid tone of voice and later realising what a hurtful thing that was to say. I felt so, so very sorry for saying that to you.

One of our family friends sent me some wonderfully full pink carnations - pink carnations are still special to me. I got so many flowers which was wonderful as I couldn’t get out to nature! It was good that you found people to console you and support you but I found the lack of confidentiality difficult to face when I left hospital. As it turned out, our family and close family friends gave me a good head start in learning to trust other people with the information about my bipolar diagnosis and get back in the saddle of teacher training.

My Aunt (now retired GP) wrote:

I felt fairly powerless as your illness was outside my specialism. I felt it was important to be there and not desert you in your hour of need and make sure you knew that I was there for you. I felt it was important to "medicalise" your illness and help you understand that your psychotic thoughts were exactly that and that when you got better they would go away. And also that medication was the key to “normality”. I felt that not all the family understood how ill you were and that they took your statements at face value.

As you got better, I felt it was important to reiterate that this was an illness amenable to drug therapy and it was not something that you could fight yourself. And also you probably would have to stay on medication for a long time.

When you were much better, I thought it was important to encourage you to have counseling, as I felt that there were family issues that were detrimental to your mental stability. Understanding how to deal with these might give you a more stable environment and that you might feel more empowered to deal with us all. Supporting you as best I could was never a chore for me as I have always loved you dearly and I have always thought of you as my surrogate daughter.

Response to my aunt

I knew I was having problems years before I was diagnosed. I had no idea what to do. I thought that all medication was addictive, that I should pull myself together and get into the rat race but I had lost my own inner voice somewhere along the way. I definitely needed it medicalised at the start so that I could create some distance between myself and the ill self.

Your encouragement through ECT, medication and counseling was really helpful – and the blanket you got me for the hospital bed made my room so much more homely! These days we can talk about it more broadly using social perspectives and family dynamics! It’s good to talk and do the gardening at the same time!

Dad wrote:

In 1997 you had been taken into hospital quite suddenly and unexpectedly, and were still lying there, some three or four days later, with your condition as yet not fully understood or diagnosed. Then it happened again in 1998! I visited you every day. You weren’t at all yourself, of course. You didn’t even know if the sink in your room was real or a trick. I got on well with the consultant and I was able to take you out in the car and then to cafes towards the end of your hospital stay!

Sadly, the ECT meant that you forgot some good evenings in the car going round the countryside. You were so ill, I didn’t think you would ever work again and I didn’t think you would ever be able to live independently. I am delighted that you became well enough to return to teacher training and now you’re teaching!

My response to dad:

I remember a pivotal day in my stay on the ward and you left in tears and you said, 'I love you.' and I remember that being a huge turning point for me because suddenly there was something to get well for. When you said it, I knew there were no conditions attached. You left and I turned around and asked the nurses if they had heard that and they did, and I cried with one of them. That was a huge part of the treatment!

My sister wrote:

I came home at Easter to find you crying and crying one day. I took you out to play tennis because I thought if you were concentrating on something, you'd stop crying. I just kept hitting balls to you but, while I was collecting them, you'd cry again so I was running as fast as I could to collect them so I could hit more balls to you! That was the day before you ran off in your PJs and by the time you were hospitalised, I was back at uni. I remember walking with my friends thinking how odd that you were in hospital! I didn't really know what to think and I wasn't told much at all. After you had ECT, I was told about it.

When I found out more about it, I thought it must have been a big deal. I don't know why they didn't include me in explaining and discussing the whole thing. But I was 18 and maybe they thought that I wasn't old enough or they didn't want to worry me during first year at uni.

When you were on the meds, you couldn't concentrate on any conversation, you'd glaze over so quickly and couldn't communicate back. It was so strange and I wondered if I'd ever have my relationship back with you that I had. We were very close. It's taken a long time but we aren't far off how we used to be, so that's great. And you are pretty much how you used to be too! :-)

My response to my sister:

I remember the tennis and quite literally trying to run away from the feeling of my brain ‘cracking up’! I didn’t know you felt that you hadn’t been told much about what was happening so I feel quite saddened about that. It must have been really hard for you being so far away at university.

I remember you writing to me. The nurses would read out your letters to me because I found it so difficult to hold my attention in the way I was used to. You wrote a list of my good qualities and reminded me of the positive times we have had together. That was lovely because I had lost my own understanding of my ‘self’!

Can I also say that, although you have been helped by your own research into bipolar, you haven’t ever been tempted to pigeon hole me into a preconceived idea of what it means to be bipolar (eg “You must be the same as x, y, z or Stephen Fry!”).

I do think that more recent medication changes have helped me feel more confident and able to know and speak my mind more easily - back to ‘how I used to be’ as you put it. I’m also pleased that you feel closer to me now. I really like being close to you and your family. I feel very fortunate in life and I adore being an aunty to your two – it’s the best job in the world!

You can read DITO's own blog about her experiences here.

C.C Neish is the author of 'The Flight of the Bumblebee', an online book about stress-related illness.

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Comments

Thank you

My dad had psychotic depression, this blog has helped me x

Thank you

I have just sobbed reading this. I spent 5 months in hospital last year and over the last 18 months I have all but lost my relationship with my sisters and some family and friends. It has been through the support of my mental health team, my parents, family members and very brave friends that I have made such progress over that time. I have put the people around me through hell but what saddens me the most is the loss of my relationship with my sisters, it is hanging by a thread. I wish they could understand that it is really scary for me sometimes and that most of my actions are out of fear and sadness. I know they want me to be back to my old self but I'm never going to be, I'm going to be somebody different, changed by my experiences, and changed by addressing the root cause of my problems. The hardest part is that I cannot communicate with them because either they don't hear what I am saying or they aren't prepared to forgive me for my mistakes. I have forgiven myself, I have to, because I realise I have been very unwell, but I wish they could forgive me, and help me to get better by showing me more support. I didn't see them the whole time I was in hospital and that really, really made me feel lonely and isolated. Mental illness can be so isolating. I wish they could see that it is through them being present, come what may, that helps me to get better. That feeling isolated or cut off, makes getting better seem so far away. I hope I haven't lost them all together but a part of me thinks I have. Not only has mental illness taken my sanity, pride, confidence, it has taken some of the dearest people in my life very far away from me. I won't give up though. If I've learnt anything, it's that the next call or the next visit always comes and with it, support finds its way to you. I have been so very fortunate, as have you it seems, to have loving and caring parents and support from people far and wide. Thank you so much for sharing your experiences, your family too. Very moving and inspiring.

Jules

Dear Jules, 7 months on and I'm reading your respond to my blog and just want to say thank you for your honesty as well. I hope you have the best year yet in 2014!

It takes a family to heal someone

Just wanted to say thank you for an honest portrayal of life from both sides of the fence. There's always 2 sides to a story, and by looking back at how family members felt and reacted, it helps create a new story that psychological and emotional "healing" . Also fantastic news that you "got your life back", and was able to continue with your professional calling of teaching. I hope u will continue to teach others about mental distress. thank you . Joy

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