Severe and Enduring.

The other day at the Media Action Group for Mental Health we were discussing exactly what is meant by that nebulous term, "stigma". It seemed to us that it is used as a catch-all phrase to describe a number of different things. It encapsulates problems of knowledge (ignorance), attitude (prejudice) and behaviour (discrimination). In trying to come up with our own definition of the term we began to talk about our own experiences of stigma - how it had impacted on our lives and how we had felt about this impact.
It soon became clear that stigma, as it is actually experienced, is both an internal and external problem. There are the external, societal problems, such as the ones highlighted above, but it is also how we deal with those issues that is at stake. The problem, then, of "internalised" stigma came  to the fore: the way in which some with experience of mental ill health can absorb the social and cultural negativity surrounding mental health conditions, and perhaps even begin to anticipate bad things happening, despite not yet actually experiencing those things.
In my own remembrances, I found it difficult to come up with concrete instances when I had actually been discriminated against. For me, the experience of stigma appeared to be as nebulous as its definition, and all I could really say was that, with a diagnosis of mental ill health, one feels one is treated somehow differently than those without any such diagnosis. I hope I have highlighted the many subtle ways this happens in this blog; how one can feel patronised or receive unwanted sympathy, or feel that simply one's opportunities in life have somehow been eroded.
For me, I suppose, having a diagnosis of mental ill health has meant falling into a lower social and economic position than I would have expected, given my apparent achievements. But, when I actually come to analyse this "feeling", it seems to be founded on little actual evidence. The fact that I have been very ill has meant that I have been unable to work, so it is perhaps self-evident that I would fall into a somewhat impecunious position, and I have not, as yet, actually tried very hard to find paid work. So am I just over-egging the pudding by saying that stigma has led to this position? Is it not just the case that I have been ill and, as many others, with physical, as well as mental, "disability", have found myself in this situation? So, is this again a case of "internal" stigma?
I  know that there is a lot of negativity attached to the schizophrenia label, and more and more, I find it hard to relate to that particular moniker. Those closest to me, particularly family members, also seem to have difficulty in equating me with my diagnosis. I suppose I am not what one would expect "a schizophrenic" to be. To me, this just shows the amount of misunderstanding that surrounds that term, and the images of either extreme, chronic illness, or violence, that it evokes. So, what also came out in our discussion was that "stigma" is attached to the terms for illness themselves, and often, as it is with other "labels", the language hides the fact that there is a thinking, feeling human being behind it. Other terms, like "psychosis", and my particular favourite, "severe and enduring" mental illness, would seem to be loaded with negative meaning. Do we, then, try to change these terms? Or would stigma simply follow any new term around?
These are not easy questions to answer, but when I was told that I was being given a diagnosis of schizophrenia, and that I was to be referred to a group for those with "severe and enduring" mental ill health, I got a sinking feeling. Perhaps my illness had meant that I had been a little oblivious to my new social and economic position, and the mention of such terms, which have so many derogatory connotations, brought home to me the fact that my life was going to be different from then on. It is how we deal with this difference that seems to matter, and I hope I'm making a good fist of things. As for terms like "severe and enduring", it appears to be the case that they just don't sound good to any ear, either to that of those with such conditions or to those without.
On a final defiant note, I would say that these epithets mean little to me now. All I want is to be treated the same as anyone else, and it seems that without stigma, whether the feelings and experiences it brings about be real or anticipated, this would be a lot less problematic.   



bazza said…
Hello David. I think there can be an element of what might be termed 'self-stigmatisation'. In cases of, say, racial prejudice it's not unknown for members of minorities to despise themselves because they are exposed to the same external influences as everyone else. I am presuming it's the same with mental health issues.
Being Jewish I am aware of some children who have hated themselves after being exposed to anti- Semitism. We are all very much a part of one big group and, in a perfect world, there should be no distinction between any 'them and us' categories.
Click here for Bazza’s Blog ‘To Discover Ice’
Dixie said…
Hi David. Your comment is certainly worth the pondering: "Do we, then, try to change these terms? Or would stigma simply follow any new term around?" My uneducated guess: it would depend on whether or not the medical profession wanted to continue it's extortion for funding. Of course many would disagree with that, but my own experience involves that particular issue.

I often hear it said, "you are what you eat." So why not, "you are what you think?" I understand the 'sinking feeling' upon hearing a diagnosis. The attitude change has been through my choice and determination. To the doctors, once I was out of sight I was out of mind. But I had to live with me. So I decided to take on what medical science wasn't providing; the acceptance and love of self. Then follow through, applying that to the lives of others. (Bazza is right: there is no 'them and us'.)

Thank you very much for this post. There's a lot of hope going on here. Keep your faith,

klahanie said…
Dear David,
We both like to think that the "stigma", the 'labels' are something that still needs to be addressed through further awareness and understanding.
I think we can be 'victims' of our diagnosis. The negative connotation attached to a particular diagnosis can make one feel they fit into a category that labels them in a most unfair way.
As you know, the media sensationalising your diagnosis in a negative, stereotypical way is most detrimental. You know I only see David. A guy doing the best he can. Your message is an important one.
Take care, Gary
David said…
Dear bazza,
I heartily agree that there really shoudn't be any "them and us", and I think that self-stigma is very much an issue for any minority group, as you rightly say.
In terms of mental ill health, I think that one can often find that one's social circle can become limited, and I have sometimes felt that my problems have led to a sort of social "ghettoisation". All the prople who I regard as my friends seem to come from either a mental health background, or have had experience of a mental illness themselves. Maybe this is another way in which stigma operates.
Many thanks for your comment, bazza.
Very Best Wishes,
David said…
Dear Dixie,
I know what you mean about learning to love yourself. For me, this has been a long and tricky road, complicated, of course, by my expereince of illness. But I think that after all this time, I'm almost there. I'm heartened that you too have learnt to be nice to yourself.
Many thaks and take care,
David said…
Dear Gary,
Thanks for your kind words. Of course, we both know that people with mental illness are always more than the label or diagnosis that has been applied to them, and I think we are both shining examples of that!
And to me, Gary, you will always be just Gary, my hairy, hippy friend.
Very Best Wishes, your way,
Dixie said…
Happy Father's Day David!
David said…
Thanks Dixie! I'm not a father myself, but my family and I did celebrate a little. My dad is now 80 years old, and will be 81 on 24th June, and is still going strong, playing golf three times a week and keeping his mind active by designing a website for the golf club. I hope that I'm in such good shape when (or if!)I reach that age!
Very Best Wishes,

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