Wearing a mask

A friend commented on “wearing a mask” to cover one’s pain or discomfort when in company, and thinking about it later that evening, I have to agree with her, that we all tend to “wear a mask” unconsciously at some point for various reasons. It is a form of self-preservation and a coping mechanism that I acquired when I was a young child. I remember all too well at the age of 11, suffering an acute bone crises (infarction of the bone due to Gaucher disease) and was hospitalised for two weeks. In those days, there was no treatment, and the doctors knew little about Gaucher and unfortunately I suffered agonising pain, not through lack of care on the hospital’s part, but simply down to a lack of knowledge. This is one of the drawbacks of having a rare disease; doctors knew almost nothing about Gaucher back then. Suffering from a rare disease makes life a little more difficult, and being special, may not feel great from the patient’s perspective, but in the eyes of the medical field, you are viewed as a challenge, an extraordinary case that they don’t come across every day, an interesting patient that spices up their day, and makes them put on their thinking caps. Thank goodness times have changed and things are very different for Gaucher patients today. I guess I'm someone who doesn’t do things by halves – when I do something I do it really well; having a very rare disease (Gaucher) and in addition a common disease (Parkinson’s), making my life interesting to say the least!