Life, the Universe, MS & Me

MS and the media
December 4, 2009, 6:00 pm
Filed under: MS

How things are represented in the media effects public opinion of them. That is something reasonably obvious to people who live in today’s society. They way that people think of MS is therefore fairly critical if we are to be able to live the way we need to within this society.


My alter ego is another example of how things are portrayed. Archaeologists are viewed within the frame of mind of people who have watched Indiana Jones, Lara Croft and Time Team, essentially we are pretty cool and like a bit of drink (bullwhip optional). That’s all fine apart from when people what you did at Uni and you tell them and they say ‘that’s interesting’, I have yet to find an appropriate response to that (normally go for ‘it’s like Lara Croft but with slightly fewer guns and a bit more paperwork’. Though I am tempted to give them a lecture on Langdale axes, prestige goods distribution and inferring cultural taboos from the evidence).


MS also has films and TV. Its one of those diseases where, if a famous person has had it than they make a film. Well it does tell others about our condition but, inevitably the people they have made programmes and films about tend to be in the minority bracket of MS’ers. Those that have a quickly progressing form. Ok it makes for a great story, as a representation though it reinforces the view of MS in the worst case scenario.


Is this a bad thing? What is wrong with people thinking we are all going to turn into such a state? Well it does mean that people cannot respond to us at the level we need. If they purely see the illness as an outwardly obvious physical condition how can we help people see that the vast majority of us are not and will not look like we are ill. At the same time if people are not aware of this then it will be difficult to elicit the appropriate response if we require assistance. This is particularly meaningful in the work place or amongst friends and family. The point to get across being, I may have these specific problems at the moment, but I am not going to slide downhill overnight and I would like to still be seen as a useful human being.


The worst thing I have ever seen on TV though that practically made me cry were some appeal films during Comic Relief. I know they are trying to help.  You know the ones were they show kids helping with they’re MS’ers parents (parent usually and single mother most often). Those ones that say about them using some of the money to take them on holiday. What particularly hurt was that it made me feel guilty for even thinking that one day I might want a future. It made me feel selfish for even contemplating the idea. Well next time I will close my eyes and stick my fingers in my ears, I’ll be damned if I’m letting it take any other possibility from my life, it feels like its had enough already.


Well now, I hope this won’t make me unpopular but I think its time to talk about celebrities.  I am actually mostly going to talk about Montel Williams. This may sound harsh but I hope it has a point. Now Montel as we know is an internationally know figure. He could be a force for good, for helping people around the world get to see the truth of our illness, whether he likes it or not given his profile he could be seen as somewhat of an ambassador. Montel has spoken of his illness a lot on his talk show; he was one of the first high profile MS’ers I heard about after being diagnosed. I spotted him whilst channel hopping. The thing is I think in some ways he is being a bit of a hindrance rather than a help. Partly this view could be because I saw him crying about it and it was only two weeks since my diagnosis.


Now I know he does has his foundation in the US and it probably does help people, but I can’t help but think that when he does choose to talk about it he could do so more generally rather than just in relation to what he feels. I have said before that every case of MS is different, with its different collection of symptoms. Part of me thinks that this grown man with millions in the bank could afford a bit of counselling to get over his emotional issues and really help.


What he does do though, and perhaps it is a very American response, is to tell everyone to drink copious amounts of juice, buy his fitness DVDs (I understand that Motel gets pain issues but I don’t think he has encountered fatigue yet by the sounds of it, he still goes to the gym) and his book which I believe is about defeating the illness by positive thinking. Don’t get me wrong I am all for positive thinking, it’s just that some people let that get in the way of reality. Acceptance of reality is important; you have to accept something as a problem in order to deal with it. I guess this can be linked slightly to my previous post on vulnerability,, why would you do that to one of your own.


Now I think some of my issues with those with fame and portraying there illness is that they are usually settled in their career before they get ill. I will admit to being a little jealous sometimes of people who have their life sorted out before they get ill and already have a house, a career and a family. I think it must be so much easier. I have said before that I started getting ill as soon as I left Uni. I have none of these things and they seem like they may be a struggle to get to. I don’t have the energy to work full time so maybe some of these things ill never be. Maybe that’s why I think Montel should stop crying. He had his life set up. I have a massive student loan and an overdraft on my graduate account that is no nearer being paid of than it ever has been. And I’m back in the box room. Envy is probably very bad.


We have to see how people view it. Is their view that MS’ers have no problems at all and can cope with these jobs, well again it depends on your personal MS. So that people see not just the worst case scenario, and not just these media types crying on TV and advocating alternative remedies (in some cases), they should be made aware of the reality of the normal average MS’er (for all that there can be one) to enable us to live better. And those with access to worldwide media ought to highlight issues that the rest of us deal with.

3 Comments so far
Leave a comment

You make some good points

Its hard to deal with other people’s perception of your illness. Keep getting your experiences out there so people are better informed


Comment by Izzi

Found it interesting what you said about feeling envious. I think that sometimes, life smacks us so hard in the face, that the emotions are left raw and things like, feeling envious of someone who appears to take things you don’t have, for granted, can’t be helped.
In my own experience of one of those life smacks, (the type that leave the world upside down and unrecognisible), I’ve felt anger towards people, who, I thought, took what I could never have for granted, and then guilt for feeling anger.
You should be allowed to feel all the emotions as they come whether negative or not because you’ve earned it.
Reading that back I’m not sure that makes much sense. I’m agreeing with you basically ;p Good blog. Keep it going. xx

Comment by Cherry

Out of all the topics you visit in this post, what struck me (too) was the reference to envy. This is so familiar! That vague feeling of envy – not necessarily the towards the ones who have more money in the bank or have paid out their studentloan, etc… but the ones who still have hope, who still can have an escalating career, who still can take for granted that their future will be better than their present. And then the anger when they tell you “I am exhausted at the end of a long day at work too”.

Comment by MsOzhild

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