“There is little or nothing that can be done”, that’s a phrase I have read over and over again in comments and posts almost daily since I started blogging and posting on Twitter, it’s also the identical phrase I have heard for much, much longer, from my own doctors. For all of us I am sure it isn’t just not what we don’t want to hear, but is also the one thing that we thought we wouldn’t hear ever again once we had that all so important diagnosis. So much so, that apart from getting us through the benefits system and an answer to all those who look at you as though you are a nutter and there isn’t anything wrong with you, a totally pointless effort in obtaining. I have written before many times about the difficulty in getting diagnosed and that I don’t blame doctors at all as there are so many conditions that all look almost identical, that missing that tiny difference that tells them just exactly what we are living with, is a nightmare I am glad I don’t have to look at on behalf of others. I like most people I think, stupidly believed that if I could just know what was wrong with me, if they could just give me the name for it, then I would be fine, they would be able to cure me and if not, at least take away all the symptoms so that I could get on with living. I, like almost everyone else had bought into the biggest lie we all grow up believing, that doctors actually always make us better.
Before anyone jumps up and starts shouting in defence of doctors, well sit down again, as I will defend them as loudly as anyone else can. It isn’t the doctors that I am getting angry with, it is the myth that we are fed from childhood on, that doctors cure everyone, unless they have cancer, we all know that is all too often incurable, but outside of that one illness, we believe they are the gods of our health and with just a few tablets we will feel great again. It is a myth that I think has be broken down and the truth put in its place, not just for the patients sake, but mainly for the doctors. Our expectation of what happens once we have a diagnosis is just unrealistic, just as are the expectations of those with a swollen ankle are, if they think the doctor will do anything for them, they couldn’t have done for themselves. My diagnosis changed my life, but not in the way I expected, yes I have had some great help, but I have also continued to get worse, where I thought before the diagnosis that I would get better. I honestly believe that if people were shown and taught the truth, that we wouldn’t have so many NHS waiting rooms full of people who could actually quite easily and safely treat themselves, as they won’t get better any quicker by just seeing a doctor. I know in myself that once I got it through my head the reality of what a doctor can and can’t do, that I actually stopped turning up to see a doctor until I was convinced that I really needed something from them, that I couldn’t just get from a chemist.
For most who are not chronically ill, the main reasons I remember people saying for going to a doctor is two-fold, neither is for diagnosis of something serious, but is because medication is cheaper or even free if prescribed, or they need a medical certificate to give to their employers to prove they are ill, neither of which is honestly a good use of our highly trained GP’s or hospital staff. I don’t know what the exact answer to both those problems are, but I am sure that it will be eased by the new policy they are bringing that permits Chemists to issue prescriptions for low-level illnesses, the medical line is a different problem.
These days the biggest thank you I have to my doctor is the day that they decided that I actually had a brain and I really knew when I was in pain and they could trust me to have the drugs I needed, to take when I needed. Of all the things they have done for me other than the mitoxantrone, trusting me with my own medications and actually prescribing what I asked for, is honestly the thing that has made my life better beyond anything else. There is a point I am sure that everyone who has a chronic illness, will actually know more about their condition than their GP does, in fact, my GP told me just after I was diagnosed that I was his first ever patient with MS, so we were both learning together. I know without any doubt that I know more than he does, as I seem to talk around him these days, silence on his side followed by him asking what I think might help and why seals my feeling he is waiting for me to prescribe what he has never heard of again. More proof that they are not gods with a knowledge beyond anyone else about how to make us well.
Breaking down myths is a really hard thing to do, but if people’s expectations were realistic, then I also think that the rates of depression that go hand in hand with chronic illness and even old age, would drop dramatically. When you know longer expect the impossible and you accept the reality, your view of the whole system changes and your expectation changes with it. It’s not nice being ill, no one ever wants to be ill, but it happens and most of us get better, especially when young, but we also have to accept some of us never will, there is nothing they can do for us.
Please read my blog from 2 years ago today 24/03/12 – Connections
I expect some of you have also seen my second blog, ‘Touching Space’, it is intended to be separate from this one but I am sure that like today they will reach out to each other and become one, you can’t separate life from emotion so I guess it is permitted. I wrote a small piece today on loneliness, to write it I pulled on my own memories of a couple of point in my life when I could have changed totally the path I went down or even ended it. These days it seems unthinkable that anyone should be lonely. We have such an interconnected lifestyle with social media invading and strengthening our ties to others, it seems almost impossible to have no interaction with another person for one whole hour far less days. Those born from the 80’s onwards…..