"Hope is desperate..." is a phrase I saw in a commentary about the willingness of people with Parkinson's to enter clinical trials.I found myself becoming quite animated by the suggestion because I suspect that this is a commonly held belief by those in the scientific and medical sectors.
This perception is, I think, quite a damaging one and widens the gap between the scientific community and those of us with serious chronic illness. The idea that people with Parkinson’s are desperate and that this is the reason they will join any trial even if there is only a slim hope of therapeutic benefit is one which needs to be nipped in the bud.
While I accept that “desperation” is in the eye of the beholder, desperation also implies that decisions are made without considered thought and without having regard for the risk/benefit ratio. This is simply not the case. Participation in a clinical trial is far more likely to be on the grounds of the following:
1. For altruistic reasons
2. For therapeutic reasons for which the risk to benefit ratio has been carefully researched and considered
3. In blind faith of the medical profession's advice and guidance on whether to enrole in a specific trial.
For me hope is rarely desperate. Hope is hope and desperation is desperation. The sooner the medical profession and those who regulate it realise that their perception of risk has absolutely nothing to do with the perceptions of those who suffer from serious conditions, the sooner medical innovation will come. The fact is that unfortunately people with illness are unaware that no one is representing their interests in medical decision making. We assume that those in charge of policy and regulations are informed and guided by those who have a real appreciation of our illness.
This is not all the fault of the medical community. If hope is often blind through an ignorance of the facts then we need to encourage better information, better education and greater involvement. We must bridge the chasm of understanding between real life experience and the development and regulation of new therapies.
I am intolerant of those who try to label my hope saying that it is "false" or "desperate". It is neither of these. Hope is, by its very nature, uncertain - therefore it cannot be false. My expectations of my future life were managed the day I received my diagnosis so that any talk of false hope is absurd. "Hope ignites a fire in the soul and rekindles the dying embers of ambition and purpose. When you accept there is the chance no matter how small, that you are not doomed to a life borne out of your own nightmares, then you start to gather information and you start concentrating on what you can do, not what you can’t."
Hope is a positive thing. It can only be a positive thing. It is not a precursor to making choices out of desperation.