Some things are just hard. I don’t know why the things that happen, happen. I know how to love and how to care. I’m a usually optimistic and happy kind of person and I like to do what I can to make others feel happy too. In life there are often questions that have no definitive answers. Why does one person develop a particular illness for instance? I mean unless there are obvious answers, like a terrible, traumatic childhood etc. Where a person has been loved and cared for, had good bonding and attachment as baby and young child and a mostly happy life with no problems, it is so difficult to understand why things go the way they do.
I want to talk about Schizophrenia. One of the most stigmatised mental illnesses of all. Textbook onset is in early adulthood, the time that is usually so full of excitment, oppurtunities and new experiences. It is treatable. There is no cure. Some people manage to live a happy life with Schizophrenia. However, it is difficult. It is more difficult than most people can imagine, to live with Schizophrenia or with a person who suffers from the condition. If a person is open to treatment that makes it a little easier. One feature of Schizophrenia is anosognosia. Nobody ever really talks about it. Even when you are dealing with Consultant Psychiatrists, they never mention it. It means that unawareness of illness is typically a symptom, rather than a coping strategy and is also the most common predictor of non-adherence to treatment, sometimes this is called non-compliance. (DSM-V, pg 101)
Living with a person who has Schizophrenia is like living with anyone else for the most part. If the person has chosen not to have treatment or participate in treatment, which includes medication, therapy etc It can be very unpredictable, especiialy if they are suffering symptoms. Its hard for the person. It’s hard for families. If a person doesn’t want to engage in treatment nobody can make them, it’s their choice, as it ought to be. Until, or unless they become a danger to themself or others and are so unwell that they lack the capacity to be able to make decisions. Only then, can the Mental Health Act be used to treat someone involuntarily. When this happens it’s usually the result of a major crisis or emergency. When mental health professionals talk about a person lacking insight into their illness, that is anosognosia. Unfortunately, the person just gets more and more unwell. If they don’t believe they are unwell why would they take medication? And so the spiral of decline continues. Until the next emergency or crisis, where the family’s only option is to call the mental health emergency response line and/or the police. If it’s during regular hours, you call the psychiatric hospital and they will try to organise a team to come out. Sometimes that doesn’t happen on the same day. Even in a densely populated metropolitan city the emergency mental health team are only available on the phone until 10pm. They won’t send a team out after 8.30pm and if a mental health emergency happens after that time you can only call the police. They are already familiar with the name they hear you say and log the call and transfer the call to the hospital who tell you that because the person has been agressive or violent they have to log a call with the police who will have to attend with the team. Then they tell you something like it will better if you call the police as they are more likely to attend promptly. They tell you they will call you back and that the police can bring the person to hospital directly themselves without the team. The police come and they are great. They’ve been to your house before. They remember you but you don’t remember them because it’s always an emergency when you have to call them. You always tell them that your son is mentally ill and requires treatment, that it’s not a criminal matter, because you always want to be sure he will be treated with care and compassion. And they always do. That has been our experience, thankfully. They are actually amazing. “How long was he in hospital the last time we took him?” the female officer asks. “They sent him home the same night” I tell her. Then they tell us, regretfully, that unless he has self-harmed or is suicidal or wants to go to hopsital, that they can’t take him. They don’t understand it either. This is new and confusing because normally if he’s been a danger to someone else the hospital tells you to you call for help. After several years of this, we have learned that there isn’t really any help for families like ours. I get it, I do. If the person doesn’t want treatment then that’s that. Even when they do, care is limited due to a lack of funding. Medication alone is not enough. For the “difficult cases” there needs to be an alternative safety net of care. This would mean that the person and the family/Carers are not left without support or resources. These are the people who are admitted to hospital, get stable are discharged and after a short while stop taking their meds, fail to attend follow up appointments and are then allowed to fall unseen through the cracks, until the next emergency. Every Time there is an emergency or crisis, you are told something different. Each time you do what you have been told to do. Most of the time it does not work as it is meant to. For instance, the hospital doesn’t call you back, or the police don’t come until the morning. Sometimes nobody knows who is meant to be doing what and you are left trying to liaise between emergency services. The system is broken and disjointed. And what about the person who needs treatment? What about their care and wellbeing? What about that persons right to a good life? Where is the line here? I have watched Eleanor Longdren’s TED talk many times. I even attended a workshop in Compassion Focussed Therapy. I heard her say that recovery is not only possible but inevitiable. She says that her story shouldn’t be the exception. I believe her. I’ve watched and listened to Dr Amador’s TED talk more times than I care to admit. So where is the recovery for my son? Believe me, there is nothing we haven’t done. How can recovery be possible without insight? How is it possible with anosognosia? I want the happy ending for my son. xo