It is known that acceptance of long-term chronic illness is seen as a substantial problem in patients with chronic illnesses. Absence of acceptance can lead to clinical improvements being delayed considerably. It can also lead to poorer adherence to the current and ongoing medical treatment. They may be branded and judged by others as being in denial.
Today the Supreme court ruled against right to die campaigners Paul Lamb and Jane Nicklinson in their latest attempt to change the current laws on assisted suicide, and I must admit I am relieved. I know that might sound heartless, and there are many voices who cry about their suffering and choice, but a recent stay in hospital made me realise that there is a wider issue behind the assisted suicide debate.
I would like to dedicate this article to a good friend who is battling Parkinson's and will hopefully be undergoing surgery soon. May you have a speedy recovery, resulting in an improved quality of life. This article is for you - one of the many unknown heroes, whose private story goes unsung but who inspires me with your bravery, insightful words of wisdom, a great sense of humour and wit.
What might be the basis for not accepting second class health? Perhaps because its as innate to our spiritual sense to feel health is natural as it is politically to demand equal rights. "In health there is freedom. Health is the first of all liberties," mused Swiss poet and philosopher Henri Frédéric Amiele.
How many times have you been asked by a doctor; "On a scale of 1 - 10, how bad is the pain?" Unfortunately I've been asked this question too many times to count. I realise a doctor needs some indication, a clue as to what he/she is dealing with, but I wonder how helpful this unreliable approach really is.
"EDS is considered a rare disease...and it is incredibly discouraging when no one has ever heard of it, when you have to spell it for your doctor and watch him Google it to find out how to treat you, when no one you know has it, and you are forever the weird one. It makes for a very challenging, lonely journey."