Tag Archives: hope

283/365 – The danger of hope 

Let me be clear – this post is about the danger of hope, and the unscientific bias it can create, for doctors not patients. In my view, people with myasthenia need hope as much as they need medication to keep fighting the condition’s fluctuations. 

I came across a fascinating article today, The most critical factor in medicine? Human bias, which gave me empathy for all doctors and in particular my own consultant. 

The author oncologist Siddhartha Mukherjee writes:

‘Every science suffers from human biases. Even as we train machines to collect, store and manipulate data for us, humans are the final interpreters of that data. In medicine, the biases are particularly acute, not least because of hope: we want our medicines to work. Hope is a beautiful thing in medicine — its most tender center — but it is also the most dangerous.’

While the article specifically focuses on the issue for clear cut research results free from bias, the above made me think that I have been harsh at times in my critique of my consultant. The criticism has been around his scientific manner and his seeming inability to provide comfort or support. Sure there are others who are able to do both, and that would be ideal, but the article made me think about how he, and all other medics, must feel each time they crush hope. It highlighted how hard that must be to get used to and that I do not envy them the task in the slightest.

At least as a patient, hope can get you through the dark days. What is it that motivates specialists? 

15/365 – The Theory of Everything

If you are having a woe is me day over the next few weeks, I’d recommend going to see The Theory of Everything at the cinema.

In case you haven’t heard, it’s about Stephen Hawking and is truly inspiring. We’re all familiar with Mr Hawking as he is today, but the film shows his journey, together with his first wife Jane, from being diagnosed with motor neurone disease as a 21-year-old post graduate student in Cambridge.

Motor neurone disease, like myasthenia, is a rare condition where parts of the nervous system become damaged. Unlike myasthenia where antibodies attack the muscle and nerve junctions, MND affects motor neurons which control voluntary muscle activity including speaking, walking, swallowing, and general movement of the body. So similar muscle activities are affected but usually the muscles waste away with MND which leads to disability and eventually death.

Stephen was given two years to live when first diagnosed but rose to every challenge with courage. At 73, he is still working and has no plans to retire.

While the film does show the psychological challenges of having such a condition, and the strain it puts on relationships, what shone through for me was his determination to find happiness and the fact that he never lost his sense of humour.

Some people think being happy is something that is out of their control but I have long disagreed. It’s about attitude – deciding that you are going to work hard at being happy by being content with what life offers and, most importantly, not comparing your circumstances to others. I cannot know what goes on in someone else’s life – I’m lucky to have people who love me, to have had opportunities in life and to have the excellent NHS staff to help keep me healthy.

Today’s image was me cycling to get blood tests before going to see the film. My doctors make sure I get them regularly to monitor the immunosuppressants.

I leave you with this quote from Stephen in the film when describing his theory about life:

‘However bad life may seem there is always something you can do and succeed at. Where there is life, there is hope.’

For more inspiring quotes from him, follow him on twitter @stephenhawking_