I don’t fit in the boxes!

 

I’ve been applying for a volunteer post and I spent an evening working my way through the occupational health form. I didn’t fit the boxes.  There weren’t even enough on the question where they wanted me to list my employment and education over the last ten years and when I got to the health questions matters quickly deteriorated.  There were seventeen questions to tick yes or no and I ticked yes to eleven.  Then I found that for each question I had ticked yes I was supposed to fill in a box detailing the condition I’d referred to, the dates in question, the treatment I’d received and how it affected me now.  There was a very clear example and three boxes!  Now I currently have Asthma, Borderline Personality Disorder, an Eating Disorder (not otherwise specified!), Hypothyroidism and Type 1 Diabetes so the first question about health problems I had experienced in the last two years took me beyond those…

Having covered four sides of A4 in information I caught myself feeling inadequate and thinking that no one would want someone like me volunteering for them. I told myself that the people who gave me the forms believed that I was capable and that many people would find this form complicated.  Then I caught myself thinking of a relative who was treated for Leukaemia as a child and is now a young man off to university.  He would have needed continuation sheets for that form too.  I felt a bit better and moved on.

A day or two later I thought about it again and realised that I was once again buying in to the idea that physical health conditions, both mine and other peoples, are somehow more acceptable than mental health ones. I don’t feel guilty about using NHS resources to cope with my autoimmune conditions and asthma in the way I sometimes do about my mental health especially when I am in crisis.

It’s a false distinction, but so easy to fall into. I have spent many hours with professionals trying to create care plans that would help me not to fall down the gap between physical and mental health care.  If my blood sugar is low I often feel suicidal even though I was fine before it dropped.  If my blood sugar is high I can fall into a cycle of worrying about what has caused it, whether I did something wrong, whether it is the start of something that will land me back in hospital.  As I panic my body releases adrenaline, my liver brings out the glycogen it has stored to fight or flee and my blood sugar goes up rather than down.  If I get lost in flashbacks, or too depressed to care and fail to take my background insulin when I need to I will quickly be seriously ill physically.  If I am experiencing strong urges to self-harm my medications are right there.  When I’ve been very unwell mentally I have believed that my insulin would poison me and stopped taking it.  That ended in a three year admission under the mental health act with the mental capacity act being used to allow staff to give me the insulin that I was refusing but needed to stay alive, day after day.

When I was first diagnosed with Borderline Personality Disorder in 2002 I didn’t even fit into the mental health box as defined by the mental health act 1983. When that changed in 2007 I realised that the fact that I didn’t fit a box might not have anything to do with whether I was worthy of help, a good person or trying hard enough.  The criteria had nothing to do with me at all in 1983 and again in 2007 it just happened that the criteria had a major impact on my life…

I’ve tried to keep this in mind when even within the mental health services I found myself not fitting boxes. When I was moved to the local PICU at the end of last year my named nurse described how they ended up providing support for people with a huge range of problems who didn’t quite fit anywhere else.

A couple of months later I discovered that I didn’t fit the boxes very well for moving on from the PICU either. I had a high risk to myself so the acute wards didn’t feel they could meet my needs.  I posed no risk to other people and so I didn’t meet the new criteria for low secure care to be funded.  I also didn’t fit the criteria for rehabilitation.  When it came to returning to the community it was agreed that I’d need a support package but getting the funding that meant negotiating even more boxes.  Social care came through a different application process to health care and the health care process was known for taking a very long time.  When my application for social care was sent back and we were told to apply for health care I drew my despair.

As months dragged on I struggled more and more and eventually hit rock bottom.  Fortunately I survived and bounced.  The maximum time patients were meant to spend on that PICU was six months.  After eight months I was discharged by a mental health review tribunal.  A couple of weeks later my support package made it through the social care panel.  The support was the same but it had been rewritten by someone who had sat on those panels and knew exactly how to word things so that I now fitted this box.  I’m now waiting to actually get things up and running.

Writing this reminded me of an image that I drew in therapy in around 2005.

When I first drew it I felt that the stick figure (my anorexic self that I now see as part of my critical parent schema) had the right idea. My fuller figured self was too vulnerable, too scary and too dangerous to be allowed to express itself.  The way it burst from the boxes of rules with huge emotional turmoil and serious self-harm at regular intervals proved that.

Now I feel differently. I respect the role the stick figure plays in helping me learn the rules but it is as my full self that I can take action, be creative and live.  Meeting every expectation of me, even if that were possible would not make me healthy or recovered.  I need to be out there trying things, making mistakes, having ideas and yes even pushing at boundaries to be truly living my life.

I don’t fit in the boxes. I belong in the world outside and if living there includes an occupational health interview here and there then that’s all part of the path I’m exploring!