How best to cover the entire system in one article? I suppose now I have a fairly comfortable experience of it, something I’ve been keen to put into perspective relative to what I’ve heard people have gone through. When I talk to these people I’m getting accounts of illnesses and situations entire sciences and cultures away from my own. Illnesses where a single deficiency or deficit in a microscopic chemical in their body irrevocably change every aspect of how they live their life from how I live mine on a second for second basis. And that’s without even taking into consideration the differences in class color and creed that society already likes to differentiate us on. I think this is good justification to say, as I’ve said before, that when we agree on something it has real weight and real penetrating substance about the experience of the disadvantaged in society. Despite this critical perspective, though, we don’t get to say what we think is important in journals and newspaper columns as much as political punters or doctors, their views are presented as evidence for us, whilst reportage and perspective and polemic by us make up a fractional amount. I feel I shouldn’t have to spell out why that’s problematic but I also very much feel that the stagnation of the arguments surrounding the representation of illness in society is exactly as glacial in its momentum towards being resolved as the level of progress is in treatment. I have to break it to these people that it is not they who should be dictating the pace of research nor some pretend objective stance on a treatment’s effectiveness or a patient’s priority.
In detail, I’d like to talk about a few ways in which the system still has to learn from past failures, as well as the effect on people’s quality of life when they do eventually make a breakthrough. In summation, though, doctors aren’t our parents, researchers and epidemiologists aren’t rockstars and the kind of authority that needs to be listened to is one that takes in to account the entire experience of living with affliction.
The system of assessment, treatment, and aftercare that is now predominant in non-emergency medical care has made strides in considering patients as people who will have to go through life with a set of symptoms, treatments or both and what, holistically, that’s going to consist of. In terms of countries where a National Health Service is present this can allow said service to form a financial trust which it can then delegate resources and finances across various outpatient departments, with the predictable squabbles over said delegation but with due detail paid to each form of care a hospital or institute can perform in a given metropolitan area.
However, it’s not without having some vast flaws, making one medical institution responsible for every interpretation of medicine that can feasibly be applied. The conflation of a patient’s physical needs and the extent of damage their trauma or suffering visits upon them is an issue which has barely waned over decades. True, many major governments are now enthusing the issue of mental health and it’s discussion but they aren’t lending many resources to solutions or into research of solutions that aren’t confined to psychology’s more antiquated attempts at building a framework. Again a perfectly viable thing to try to do but not even remotely related to the kind of care that’s going to help someone with a complex condition throughout their entire life.
Meanwhile, appointing themselves to come up with solutions and conjecture alike are otherwise totally unqualified members of the press. I claim no medical expertise, simply an ability to express a subjective experience I’ve seen reiterated so many times across so many contexts between myself and hundreds of others that it might sail close to the objective yet chiefly anecdotal evidence that medical experts are magnetised to – that I’m critical of some of their previous methods or frameworks should have no bearing either way. Unfortunately, the experiences of women or those who are mentally ill or those who are based in a developing nation were found to be far less ‘digestible’ by the imaginary audience of ignorant commoners that the print press pretends to cater to, long before interest in mental illness as a public health concern reached its current levels. When I began this project then, I knew that to one extent it would be a unique and valuable perspective and to another I knew I was broadcasting something that sounded awfully like a diary into a huge blogosphere to which my usual methods for coming up with new writing were as dated as I find much of the discussion surrounding mental illness to be when I was in my teens and twenties, decades ago.
Summararily, I’ve been able to lay out why my writing might be important and why it risks sailing into irrelevance and why material put out be researchers and experts of practically all definitions should run the same risk. Things should be democratic than, a verbose discussion amongst informed interlocutors that doesn’t discriminate based on background, where every suggestion is given equal weighting within reason. But it isn’t. It’s diluting with each opinion, it’s inflating with each marketable trait of the discussion and it has very little to do with transforming peer-reviewed evidence into medicinal technique. I’d never presumed to recuse myself from contributing to this pluracy of opinions and I’d never expect praise for admitting that but I consider that very thing, that my experience is one kind of suffering among thousands to be the beginning of my critique of this system not the summary of it. My regular readers know this and are keen to read about the pieces of evidence I submit in relation to myself and others. In layman’s terms, it’s scary to think that I can tell these anecdotes about my time being hospitalized under conditions of corruption and neglect and then have to think that the situation hasn’t improved. There’s plenty of material waiting should I choose to take a less polemical approach to writing about mental health care but I can’t in good conscience do that when there’s not been any great deal of progress. Even now, hospitalization could many going to a place which doesn’t know much about me or how my illness affects me and doesn’t care to find out more. Just like it did almost thirty years ago.
The new way does indeed value the internet collective, as I do but it primarily concerns the individual. No amount of funding or financial development can pay for the perspective of those who suffer from these illnesses talking about what’s best for them. This testimony, force multiplied by the internet, is the critical mass at which change will take place.
Thank you for reading.
Lamia Islam
CHANGE YOURSELF!!!