Thursday 2 February 2017

Time to Talk 2017: stigma and psychosis

This is the first blog post here for almost a year.  I haven't felt the need to write about mental health matters for a while.  We've been living abroad and generally having a grand old time.  But Time To Talk day has rolled around again and I thought I'd put down a few thoughts about stigma.  The last time I wrote about stigma and mental illness, I managed to offend a number of my lovely friends: they couldn't understand how I felt stigmatised, they had all wanted to reach out to me during my illness but didn't have the opportunity.  I know how caring my friends are, and how they would have been the first to visit if they had been told where I was and what was wrong.

But the fact was, for me, I spent a considerable period of time (the precious first few months of my son's life) in hospital with no visitors other than immediate family.  It was a very isolating time, without a smart phone to stay connected and with my confidence to initiate any form of communication at a very low ebb.

When a loved one is psychotic, and unable to make rational decisions for themselves, the presumption is that they would not want anyone to know about their illness.  This well-meaning stigma (but stigma it is nonetheless) perpetuates the myths surrounding psychosis:
- psychosis is to be feared
- psychosis is shameful
- psychosis is dangerous.

Psychosis is absolutely terrifying, for  sure.  For me it dredged up all sorts of agonising, humiliating, disgusting thoughts.  Thoughts that quickly crossed over from mere nightmare to the realm of warped reality.  A reality that I fought and fought - there was no way I wanted to be burned alive, to be locked up and alone forever, to be responsible for the end of the world.  

But underneath all that terror, I was still Kathryn.  I still remembered who was top of the leaderboard in Strictly Come Dancing.  I still loved my husband and family.  I still liked to eat Rice Krispies with a generous sprinkle of sugar.

I'm not sure what I would have done or said to anybody who did venture along to the Mum and Baby Unit ward of the Royal Bethlem Hospital.  No doubt I would have attempted to make tepid cups of Tetley tea while sharing out the Marks and Spencer's goodies.  No doubt I would have tried to make some sort of conversation (assuming I wasn't in the middle of one of my full blown psychotic episodes as mentioned above, causing the whole ward to go on lock down).  No doubt I would have tried to ask how they were and enquire as to their own health and happiness.  The conversation would be stilted and one sided. But I would have known they were there and it would have been a precious bridge to the "real world".

Being locked in a psychiatric ward (no matter how homely the staff try to make it seem) is far from most peoples' reality.

As I've said before, one set of friends did persevere enough to make a visit (but this was after my first visit back home, when I was well on the way to recovery and discharge).  But I really appreciated the effort they made to make a walk around the wintery Bethlem grounds - past the psychiatric ICU, past the forensic high security wing - as normal as a stroll through a National Trust property.

I'm also grateful to my family: to my husband who visited each day, no matter what state I was to be found in.  Who reassured and reassured and reassured me again that Yes, he was there and Yes, the baby was OK and Yes, he loved me.  To both my sisters who (in different ways) provided unmeasurable levels of support and unconditional love.  To my parents, who understood and respected the consultant's strong advice to stay away for the duration of The Bad Weeks, even though they wanted desperately to be with me.  And to my in laws, particularly my MiL, who provided so much practical help and assistance and acceptance.

Yes, my loved ones kept me in a bubble for a time, but I understand completely why they did so.  And every single family member since has wholeheartedly supported me in both my ongoing recovery and my campaign to raise awareness of severe mental illness.

I'm a lucky, lucky lady.

With love and gratitude,

Kathryn x