So, this has been a rather happening week in the world of MS, never before has so much been said about MS in the press. It has kept me rather busy at work, which is of course good. However when I walked home today three things kept on annoying me.
1. People having a go at other people with MS or MS charities that say that it is good that something like this can raise awareness of MS. There is a huge misunderstanding here, it is NEVER good when someone gets diagnosed with MS, never. However when someone in the public eye approaches the press and talks about it, this is a good thing. There are 100 000 people in the UK living with MS, it is one of the most common neurological conditions for young adults. Yet we very rarely hear anything about it in the media. And from the news that has been circulating this week in the media, it really proves that the general public does not know enough of the condition at all. So people like Jack Osbourne are very needed to help raise awareness.
2. Jack getting fired from his job because of MS. This makes me see red, with MS you should never assume anything, you never know what is around the corner. After living with MS for a few years you get pretty good at reading signals. And then you’ll know what you can and can’t do. But for someone to say to him that he is a liability because of the diagnoses is just utter nonsense. In the MS Trust at work with MS book you can read
“On receiving a diagnosis of MS, family, friends and even health professionals might give advice to stop working. This could be because they do not understand the nature of MS or because they want to protect you from stress..”
Research shows that 15 year after being diagnosed 80% of people with MS no longer work. I do think with more awareness and help, this number must be able to go down. But it most certainly never will if people get fired like that. His employers should be ashamed of themselves.
Last year during MS Awareness week we were interviewing some great people with MS at their places of work, talking about how their employers had helped them to continue on working. Now I know not everyone can, but the ones who can and want to, should be able to get the help to do it. I’ve had to make some small changes at work myself, and I think it is working out well for me and my employer. Here is a video from last year of me talking about work and MS (pardon the rather dodgy blonde hair)
3. The term MS Sufferer. I HATE it. I am a person with MS, I may suffer from time to time. Some people with MS suffer all the time, but they are still people. They are not defined by their suffering. Stop using this term NOW! I was on the radio at the start of the week, and when they presented me as a sufferer I really hated it. Thankfully it was changed later on. Really I should have made sure it was never used in the first place, as it seems journalists likes this term.