THE BLOG

Don't Let a Disease Define You

28/02/2013 15:26 GMT | Updated 29/04/2013 10:12 BST

When diagnosed with a disease such as Parkinson's that literally takes over your life and changes everything you could possibly think of, it's hard not to be enveloped by the enormity of the situation. However, don't lose your identity and let a disease define who you are.

At a Parkinson's social event some time ago, I found people coming up to me saying they'd got Parkinson's, or caregivers would tell me their spouse or parent had Parkinson's. As I listened, I became acutely aware that nobody was thinking of introducing themselves by their name, but instead referred to Parkinson's first. It's often not what you say, but the way you say it. When introducing myself, I say "hello, my name is Elaine Bentonhttps://www.amazon.com/author/elainebenton, and I'm an author." I then may go on to speak about Parkinson's if it's relevant to the situation. The difference to me is monumental, as I see the person first, and not the disease. If you have Parkinson's, please introduce yourself using your name and don't give Parkinson's the honour of being introduced first!!! You'd be surprised at how many people forget to say their name, or what they do, where they come from; all of which seem incidental, as they immediately launch into "I've got Parkinson's....".

There is no doubt as a fellow sufferer, I whole heartedly agree and admit this lousy disease rules much of our lives and that of our loved ones. Let's be honest, life is never going to be quite the same again when diagnosed with a degenerative disease that to date has no cure. It irritatingly makes itself present in a pesky way, much like a three year old child who's had too many sweets and hyped up on sugar just wont sit still or go to bed. Don't give Parkinson's the satisfaction of being more important than you. You are a unique, special person, and I'm sure you have something of value and consequence to contribute. So put Parkinson's on the back seat and take a ride in the front for a change. It may sound like a small difference, but the view is so much better!

As guilty as many sufferers may be of losing their identity due to a devastating diagnosis, some doctors are equally responsible for the same injustice, allowing a disease to define the patient.

I am fortunate to attend a wonderful hospital, which upholds high standards and deservedly has a fine reputation. I am truly grateful to be under the care of some amazing doctors and consider myself very lucky. If my doctors are reading this article, I would like to take this opportunity to say "thank you" for looking after me. I know I couldn't be in better hands.

Many years ago, I had the misfortune to come across a doctor from 'the old school' who was making his morning rounds in the ward followed by an entourage of doctors and nurses which is standard procedure in most hospitals. I found myself faced by the scenario of doctors standing at the foot of my bed; all eyes upon me, not bothering to speak nor acknowledge me, or have the good manners to use my name, which is insulting and lacks compassion. Referring to me in the third party, they continued to talk about my case as if I were merely 'a disease' and not a person at all. The doctor and his group left my room without a word, and hurried on to the next patient.

Having spoken to patients attending various different hospitals, I am sorry to say this practice appears to still exist. In today's world you would have thought an archaic routine such as this would have long been abandoned, but alas I hear otherwise. I fully realise time is of the essence and 'the doctor's rounds' are not a 'social call', but there is a need for a change in attitude. From a patient's viewpoint, this behaviour not only lacks empathy, but quite frankly is unacceptable. It doesn't take much effort to treat a patient with courtesy, a smile, but most of all, I don't want to ever be called again "Gaucher with Parkinson's" ... I have a name, and it's Elaine Benton!

www.elainebenton.nethttp://www.elainebenton.net/