MS. Is that the same as ME? Is it something to do with Parkinson’s? Is it connected to Motor Neurone disease? How much do you really know about MS? I have to admit that up until recently, my knowledge of the condition that affects around 100,000 people in the UK was fairly poor. So being involved in recent research for the charity MS Society was enlightening for me. Through meeting a number of people affected by MS, directly and indirectly, I have been able to get an understanding of what the illness is and how people cope with it.
There appear to be so many misconceptions surrounding MS, confusing it with other illnesses, accusing people of faking the condition and people generally having very little understanding. The public knowledge of MS by those who aren’t affected by it is significantly lower than other chronic illnesses, like diabetes and cancer. For people with MS, the casing around the nerves has broken down and the messages being sent to the brain and then the body, no longer translate properly. This means that the simplest of tasks can become virtually impossible.
Can you imagine one day not being able to even put one foot in front of the other? The fact that there is currently no cure makes life harder. It is also completely unpredictable and uncontrollable. It’s difficult to fully comprehend how this particular condition might make you feel, but the thoughts that spring to my mind are; frustrating and scary.
Perhaps one of the reasons that awareness is so low is that in some cases, and particularly during the early stages, there are no visible signs of MS; it is hidden, almost invisible. Some people can continue to go to work and apparently live their lives the way they used to, before diagnosis. The body can be attacked at anytime, creating an inability to walk one day and the next week you’re perfectly able.
The lack of understanding and awareness of MS means that we don’t necessarily look out for it in the people surrounding us. For example would you judge someone on the tube who asked for a seat when that person ‘appeared’ to be perfectly well? We are all accountable for being unobservant or inconsiderate at times, so perhaps we need to think more in general about how people are feeling, and that there’s is always more to the eye than what you see.
For an organisation like the MS Society, who we are currently working with, the way in which they communicate an illness that has a low profile is naturally very different to large medical charities such as Cancer Research UK. Often more specific condition charities have limited resources, so it’s vital to be creative and think of unusual ways to communicate messages. Research is a continuous part of that journey, understanding how all stakeholders feel about an organisation provides invaluable insights which will improve how you communicate.