Sunday 6 April 2014

SeeMe14 Reflections, Who are we to Judge

I have had quite a few things rumbling through my head since SeeMe14 Agenda setting event - so taking a leaf out of my friend @micmacfisheroo's book I'm going to get them out of my head and down on paper.  You may not agree with them - and that's ok as we are all entitled to our own thoughts and opinions. 
I wasn't going to mention this - but then saw via another blog that someone else had felt similar. 
We spent lots of time talking about how everyone should be treated as an equal, see past the label of a diagnosis etc.  But underneath I felt that there were some rumblings around who has what diagnosis - and how bad is life for them in comparison to someone with perhaps a 'lesser' diagnosis. 
I'll try and explain what I mean. 

When I first shared my own story Behind Closed Doors, I felt like who the hell will be interested in my story.  Through work and personal life I had met people who in my eyes were living with a condition which was far more 'severe' than mine.  My own experience actually - in my eyes at that time felt shameful to me.  And when I looked at it in comparison to what other had experienced, and were still experiencing it felt almost wrong that I should share it.  But it was a massive part of my recovery to share it, to get it out there and to stop feeling ashamed around what my experiences had been. 
Because my condition, and experience was quite unique - and not in my head the 'normal' psychiatric experience, time and time again I tried to tell myself that it wasn't that bad - but it was.  It was complete and utter hell to me. 
This is what I suppose I'm trying to explain - that it doesn't matter what your diagnosis or experience with mental illness is, what matters is how it impacts you and makes you feel.  To me it's like these stupid pain measurement charts in hospital asking you to rate your pain.  Someone can rate the pain of a broken toe at 10 - yet someone else can rate the pain of terminal cancer as a 7.  This is why I feel that sometimes we are still focusing on labels rather than on impact of illness.  And that in itself, in my view is stigmatising and discriminatory behaviour.  Are we any better than those we accuse of stigmatising and discriminating against us - if we are also discriminating ourselves and others based on diagnosis?  I don't know about you guys - but for me self-stigma was horrendous. 

The first time I ever felt that my experience was actually validated was when I attended a WRAP course and I met my now WRAP partner and best buddy GG.  I knew GG through work, but wouldn't say at that stage that we were buddies.  One of the exercises we had to do was talk to the person next to us about our experiences, and GG was my partner.  We then had to introduce each other.  As I sat and listened to some of GG's story I was thinking to myself  'How the hell is this lady still alive, she is so strong, and imagine living with X diagnosis'.  I was then utterly astounded when GG introduced me to the group as 'This is Donna and I don't know how this woman is still standing'
I think if I remember correctly I just cried. 

This is when I truly began to understand that in my eyes a diagnosis is there to help medical professionals - and sometimes ourselves, to make sense of our experiences and try and find a way to treat the symptoms of our illness if we want them to be treated.  It is not there to define us - or to decide what quality of life we will or won't have.  Or at least it shouldn't be. 

In reality I know this isn't always the case.  Having spent 14 months working in an acute in-patient setting as a peer worker I met many wonderful people with many varied diagnosis's.  Staff often used words like 'severe, mild, moderate, enduring' which often confused me as lets face it every single person who was in those wards was there because their situation - regardless of their diagnosis had become so painful to them that they ended up in hospital.  Who are we to label it as mild, moderate or severe?  Each persons experience is their experience, and is unique to them.  We cannot make judgements on how much it impacts them.  Is my good friend GG's experience of living with a diagnosis of Schizoaffective Disorder and more or less painful than my other good friends experience of living with a diagnosis of Social Anxiety.  Who are we to judge?

This brings me nicely onto the other thing that has been rumbling through my head.  The discussions around the 'Recovery' movement.  What people thing about the word, the concept.  My take on it is that I believe in the concept of recovery but I am unsure about the word. 
I really wanted to attend the pop up workshop on this at SeeMe14 but it co-incided with another workshop I had booked into.  Like everyone's experience of mental illness is unique - I truly believe that everyone's experience of 'recovery' and what that means to them is unique.
 
As a WRAP facilitator we discuss the concept of recovery very early on in the WRAP process.  I am always honest and say that I struggle with the word, and that I prefer to think of it in terms of living well.  I often equate it to the word wellness. 

I have no idea if I'm 'recovered', I don't really care as what I do know is that I'm living well most of the time.  I still take medication, I still use various techniques and therapies to keep me feeling well.  I don't use formal mental health services as I have done everything within my power to stay away from psychiatrists since my only contact with them in my early 20's given the lack of understanding by them around my issues.  To me 'recovery' could be seen by some as a wee bit of a label too.  And a confusing one, especially for someone who is living with a diagnosis of a long term mental health condition.  I will use the example of my friend P who is living with a diagnosis of DID. 

I met P whilst working on the wards, and I felt extremely patronising when I started to try and plant the seed of belief that recovery was possible (as per my job description - to inspire hope that recovery is possible)  as lets face it P was going to be living with this condition for the rest of her life.  But it was a huge learning experience for me - and this is when I really started to understand that I had to change the language that I was using.  Instead of talking about recovery - a concept that P could not understandably relate to,  we started to talk instead about wellness. 
These conversations went on sometimes for minutes, and sometimes for an hour or two.  P still doesn't believe that she will ever 'recover', but thankfully she does know see that she can live well. 

SeeMe14 was an eye opener for me, it exhausted me, confused me in some ways, and gave me clarity in other ways.  But one thing is for sure - it inspired me to keep doing what I'm doing and that is to keep banging my drum.  I can't change the world but maybe I can help change one more persons world. 

2 comments:

  1. Interesting blog post Donna. Good to hear about your peer work and WRAP, both of which I've been involved in. Both of which I think have merit.

    I was labelled with schizoaffective disorder but didn't believe or accept it, took charge of my own mental health, tapered the drugs - risperidone, venlafaxine, lithium - and recovered. Yes I use this word and used it after similar psychiatric engagements in 1978 and 1984, before the word was fashionable in Scotland, or as some would say, "hijacked" by government to get folk back to work.

    For me the peer support movement in mental health was and is a civil rights movement. That's why I got involved, back in 2008, setting up Peer Support Fife and doing independent MH work. Caring duties brought me back closer to home and I'm now an activist and campaigner, because of human rights issues happening to my family. For me unacceptable behaviour in psychiatric settings, the denying of basic human rights and free speech.

    But the reality is coercive treatment for those of us who resist the drugs and labels. Until we conform or appear to conform but rebel inside as psychiatric survivors.

    All the best in your recovery focused work Donna. It is good to get alongside people on their journey wherever that leads. They will be the ones changing their lives and we will have the privilege of providing a helping hand or signpost or listening ear. Maybe helping them speak out against coercion or sharing our stories of hope. Chrys

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  2. Hello

    interesting post, the various personal reflections of seeme14 have been good to read and there are so many people I'd liked to have met in person had there been time.

    I agree with you, "distress" (best word I can think of) is subjective and absolutely cannot be put on any scale, put under any label that adequately defines how it affects the person experiencing it. I think the environment of non-disclosure at seeme14 was a good thing, though I have some reservations about whether naming one's distress, should one choose to use the labels should count as "disclosure" but that's a philosophical discussion for another time!

    The subject of "classification" (in terms of mild-moderate, severe and enduring) came up during the workshop I facilitated. I do define myself as suffering from a "severe and enduring" mental illness, I'm mainly driven to do the to highlight the hypocrisy at play within mental health as in spite of that, I receive no services or support from the statutory agencies. My severe and enduring mental illness is the "wrong one". This is purely done for me, by me however and it's not a classification I'd apply to others. People are people first and foremost and that's how I like to treat them.

    I really, really wish you'd been at the workshop, I'm trying to get it written up for the seeme14 blog so hopefully you'll have a better idea of what was actually said. Perhaps we can meet some other time to discuss things?

    Take care.

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