Yesterday I gave an interview to a trainee clinical psychologist for her thesis on parenting and bipolar disorder. I had been very nervous about it as I didn’t know what she would ask and what it might bring up for me, but it was a positive experience and it made me do a lot of thinking.
I thought I would write a little bit about what it’s like to have bipolar I diagnosis and be a parent. I have two children, one is thirteen and one is six, nearly seven. Both my children are doing very well at school, exceeding or matching grades in all subjects. They’re described as happy, kind, outgoing, capable and talented, at school. They are generally very well behaved and thoughtful, they have empathy and they’re creative in their own ways. Obviously, I am very proud, but I’m not trying to boast. When I said these things to the psychologist, I realized that despite this enormous issue: bipolar, we have all managed to get through it, and carry on.
The psychologist asked me about any difficulties parents with bipolar may face. There are endless difficulties. I said I thought being a parent with bipolar was almost like another form of bipolar in itself, as it has a whole other dimension. I’ve been a parent since I was seventeen, that’s thirteen years, and my eldest child has been through a great deal with me. When she was born I was very ill, depression mainly, and agitation. I also had racing thoughts and I self harmed regularly and habitually. I was suicidal. Basically I was going through a severe mixed episode. I fed her, cared for her in every way I could, but inside I felt so bad there aren’t words for it. This carried on for three years, then I was hospitalized and properly medicated, though I couldn’t say I had ever ‘recovered.’ At this time, I should have already been in services but had received a letter two years previous from my care co-ordinator to say she simply had too many people on her list and would have to pass me onto someone else, though she couldn’t say when this would happen. It never happened. This was gross negligence. The way I suffered during those years is not something I could wish on anyone.
When I was in hospital, my mum had to take care of my daughter. I was in for long periods of time, and when I would see her she would often go blank, and it was painful for both of us. She resented me for leaving her. I was ill constantly for all the years up to 2010, medications not working, and having my second child. After he was born in 2006 it was a downward spiral, and I felt it had no end. In 2010 I made a decision to commit suicide. I had an elaborate plan, and it would have been devastating, but I was in so much pain I felt I was being tortured and I wasn’t rational, and I couldn’t think clearly about anything other than going through with it. My psychiatrist had been writing up a referral to a specialist bipolar unit and having tried all the medications they had to offer I felt completely defeated. I wanted to give medication one last try, for my children, and thankfully, Depixol injections worked. They completely flattened my mania, my hallucinations, my agitation. Lithium has helped me to stop self harming, very effectively, and has stabilized my mood alongside lamotrigine which I believe has helped with depressive symptoms. I tell people I’m ‘stable’ but in reality it is a daily challenge and I have had to limit myself in so many ways to stay well enough to be a good parent. This past three years has been about building on all our strengths as a family, supporting each other and for me, keeping a routine and being focused on writing as my work and therapy. My psychiatrist asked me recently, do you think you’re a good mother, doing everything you can for your children? I could categorically say YES.
When I was manic my thoughts would race, colours and senses would be more intense, I would have a pressure to talk and talk, I would want to do lots of things and have lots of energy. My thoughts would be grandiose, and I would do anything for more stimulation, which for a lot of people would involve drink, drugs, sex or spending money, but in the case of a parent who has to stay and look after children, I would ring people on the phone incessantly to talk, about anything, I would pace around the house feeling insane; I would need diazepam, and at one point, I was taking so much of it I was completely hooked .My body would be restless, I would need to move, I would shake, and not be able to lie down or sleep, and I would self harm because I couldn’t cope with the intensity of it. I would feel as though I was crazy; I remember a psychiatrist asking me what I wanted them to do and I told him I wanted them to take the top of my head off. When you’re with a toddler, or a teenager, it is the same: they are so over-stimulating, especially when you’re stuck in a house with them (and to be honest taking them anywhere in this state isn’t a good idea), it is overwhelming. My husband has had to take lots of time off work in the past to help me cope. A lot of people don’t want to be around you when you’re ill so you find a lot of your support is cut off. In hindsight, it can be understandable, because you’re irritable, you say things you wouldn’t normally say, you become enraged easily, you snap, you can’t hide your emotions.
When I was low the problems seemed endless: being so tired and sad, not having any motivation, crying, sleeping too much or too little, ruminating, self-persecutory thoughts and voices, hallucinations (when very high also), feeling a void inside nothing will ever fill. Pure despair. You have to cook, clean, get them to school/nursery, sort finances, sort shopping, go to parent’s evenings, after school events, wash them, clothe them, play with them, give them affection; and you think of nothing else all day but your own death and how you might accomplish it, how everyone would just be better off without you, how your husband will meet someone nicer who will make a nicer mother for your children (yes, this is how irrational you’ve become), but you’re too lost and exhausted to try. Either high or low, agitation and psychosis is something that would cripple me, and often, my husband would have to medicate me on chlorpromazine, which is a very old anti-psychotic but the only thing that ever worked, and lorazepam or diazepam, and put me in bed. When I’d wake it would begin again, the tension mounting, the anxiety, the agitation, the breaking down.
These episodes don’t last days, and even when I was ultra rapid cycling and very ill (mood-swings lasting hours and changing very erratically) it would go on for months. You’re probably wondering how the children coped. I tried hard to be there for them, talk to them, be open with them, and not let them down. But I have an acute sense of failure and every time I so much as had to go to bed to lie down, I woke up feeling like I had failed them and I couldn’t stand it and it fed into my bad feelings about myself. I believe very firmly that children are entitled to know what’s going on and should be allowed to be upset as it is a normal human reaction, to a parent going into hospital, or mummy getting upset, or being drowsy, or not being able to play, or being irritable. I found that others tried to pretend everything was alright, and gloss over things or sugar-coat them, to protect them. This, I have always thought, is damaging. Of course, you don’t want to devastate your children or upset them, but their natural emotions and reactions are an important part of their wellbeing, and shouldn’t be stifled. There are ways to comfort children, and be open and honest at the same time.
I believe that there needs to be centres for parents with severe enduring mental health problems, where they can take their children, receive treatment, and be around others in the same position. We need this provision, it is sadly lacking, adult mental health services have a huge chasm because they don’t make provisions for families. They make provisions for families whose children are suffering from mental health problems, as they did for me when I was a child, but not families in general, families who may feel very isolated and alone. I think that every family who goes through a parent suffering from mental illness should be offered family therapy as a matter of course. I also think that specialist personal assistants should be used in mental health services, especially for families. Practical support given for people who maybe haven’t got the support they need and need help doing practical things, while they are unwell. I think this could be even more beneficial that therapy in the long run, keeping families together and parents at home. It could save a lot of money on lengthy hospital stays, children having to go into care temporarily. Not once can I think of an instance when being a parent with bipolar was catered for or treated as an important thing, for me. Even simple things like providing books and toys for waiting rooms in mental health clinics would make a difference, to people having to bring their children in with them. Otherwise, these places are blank, clinical and unfriendly. It’s almost as though professionals pretend your kids aren’t part of the picture, until they feel a need to involve child social services, which often isn’t necessary.
I recently took part in a computer-based bipolar support package, where I was filmed answering questions about parenting which would be made into a film which could be accessed online, to help other parents going through the same thing. I think this is marvellous, based at the Spectrum centre at Lancaster university. If anyone wants to know more they are on facebook. There are people out there trying to listen and make a difference, but as we all know, it all comes down to funding essentially, and I think we all know the situation there.
The psychologist asked me if there were any positives in being a parent with bipolar. Children are the best distraction the world has to offer. If I am agitated and I go walking with my son, who will talk to me about Spiderman and maths and Harry Potter, I feel ok, I get rid of some energy. We play scrabble, and although it is hard to stay focused, it keeps me focusing on something. We cook, we bake, we read books, we draw, we listen to music, we just get along. I have to stress that when it is severe none of these things are possible, but on a daily basis the children keep me in a good place with these distractions. My daughter and I have great conversations, about everything. I get so much joy from them, from seeing them happy, it is the biggest motivation I could ever have in my life. I write because I love them and want to do well at something in my life, and I stay reasonably stable, not just because of the medication, though it has helped enormously, but because I have them in my life and they are my purpose. The psychologist said she’s finding that a lot of people like me, as parents, are telling her similar things, that their children are flourishing, being labelled, ‘gifted and talented’ and are sensitive, kind and mature for their ages. I feel like I must have been doing something right, though obviously, these children have not been without their fair share of heartache over this. But I believe that children need experiences, and the emotional support and backing of their parent (s) or carers so that when they get older and things happen in their lives, they are prepared in part, and will learn quickly how to adapt and cope.
My daughter went to school one day and told the students and teacher in her Personal, Social and Health Education class that her mum has a mental illness. Later on, one girl sneered, oooh, your mum’s mentally ill! To which my daughter replied, ‘some people are. And?’