Is It Wrong to Sing Opera in the Shower?

One of the blogs I've been following with great interest is Stuart Sorensen's blog.  Stuart, a mental health professional has been running an excellent series on psychosis recently.  I've no idea why this doesn't show up on my blog list, but here's a link: Stuart Sorensen.  One of the things I really like about Stuart's writing is his respect for and empathy with patients and families.

One of his recent posts talked about high expressed emotion (HEE).  It was the first time I'd seen a written explanation of this concept, which I had heard muttered occasionally by various professionals at Julie's hospital.  I have even been given advice to "avoid high expressed emotion in the family", but with no explanation of what this meant, I tended to assume it just meant avoiding sudden loud outbursts.  Did it mean not singing opera in the shower any more?

Stuart's blog explains that HEE is concerned with reactions like hostility and criticism, but it's also about over-protective behaviour.  There is evidence that people with psychosis, like Julie, do better in families that avoid HEE.  This is useful information for people like me trying to parent a fifteen year old through psychosis, but the next thing I need to know is what behaviours in my own family would fall under the heading of HEE, and how to change them.  As Stuart's blog points out, caring for someone in these circumstances is unbelievably stressful, and it's not really practical to just put a blanket ban on expressing all emotion for ever more.

Stuart's thinking about writing some posts in the future with advice for families about HEE, so he's asking for people to send in questions.  If you're interested, I suggest you follow up his relevant post here.

I have to admit that although I can see that this concept of HEE and family environment is useful, and I do want to follow it up, a small shiver of depression runs through me at the thought of trying this road again.  We have been through so much as a family caring for Julie, and some of our worst experiences have been at the hands of well-meaning professionals who were hell-bent on making us "change".  For a long time, Julie thrived in the hospital, but struggled hopelessly to manage outside.  The obvious conclusion was drawn that the family was the problem, and we were subject to endless scrutiny and theorizing.  In fact, scrutiny would have been less problematic, but lack of resources meant that we got a good deal more theorizing than was good for us.  No one bothered to actually ask us what was going on, still less come out and spend time with us.  There was no family therapy either at this time, so we were subjected to "coaching" sessions with an outreach worker, who would not let us speak or ask questions and who harangued us for being "anxious".  Any expression of negative emotion was outlawed, and because asking questions usually involved expressing doubt, these were banned too.

It caused a huge rift in our relationship with the staff caring for Julie at the hospital.  I cannot blame them for trying what they thought was the best course of action, but it alienated my partner, Joe.  Fundamentally, they confused our behaviour when we were with them - asking questions, expressing concern, displaying frustration - with our behaviour when we were alone with Julie.  I suppose we were a nuisence family at the time because Julie seemed to be so much better in hospital, but we kept insisting that home visits were going badly -  it was easy to assume that the reason why she wouldn't settle at home was us.  It was hard for them to see that the way we were behaving with them was normal "office" behaviour for people like us who were educated professional people used to being in charge, but not the behaviour that we took home to our children.  Expressing anxiety to a health professional does not equate to being anxious around your kids.

The situation has improved, though we are now wise enough not to express much emotion in front of staff.  The ups and downs of the last year have made it clear that Julie's illness is complex and it is not simply the family environment at fault.  Over time, staff have had more opportunity to talk to us and observe us with Julie, and nowadays they tell us we're a wonderful and very supportive family.  Flattering though this is, I am sure there are real improvements we could make with help.  After all, parenting Julie is going to be a long process: perhaps longer than we originally envisaged fifteen years ago.