Wednesday, 4 March 2015

"Healthy...but days later I couldn't walk"

Yep, the article in Woman magazine is out and it's what I expected (judging by the articles they usually include in there), but it's still a bit disappointing.




Facts have been juggled around and shaped to make it a "better" story, some things over dramatised hugely, and other things are just untrue. It was read out to me before hand, albeit quickly, and as I was listening I kept thinking "ok...that's hyped up, but I can see what you are trying to do" and approved it after insisting on a few changes. However, reading it on the page along with my pictures has made me more critical.

I'm not upset (I used to work for the local paper, and studied Communication Studies, so I'm more than aware of certain journalism practices and what makes something 'newsworthy'). They want to sell magazines and saying that I "studied film" sounds better than "I wanted to study film, but I could never make up my mind in what capacity and finally realised it was going to be an impractical career for someone with MS anyway" or whatever I waffled on about ;). However, that's the truth and what happened. But that's the media, folks.

So why has the whole thing disappointed me, I hear you ask? Well, it was meant to be linked to the MS Trust campaign "Making Sense of MS" (there is a tiny link if you can spot it), and sadly the journalist's assumptions of what MS is has over-shadowed the truth. She said she had no idea of what MS was and the effect it has, and she spoke to an MS sufferer for an hour (admittedly not that long, but we did cover a lot of stuff) and yet still resorted to making out I'm in a wheelchair a lot of the time, because that's what her idea if disability is and it 'sounds better'. It felt like it undermines what suffering from MS is like for me. It's literally like someone has said 'yeah you have it shi*t...but not sh*t enough!'

The fact that it's also written in the 1st person, gives the impression that I wrote the article, and therefore (for anyone who knows me) will make them think I sat there and blatantly lied and over-exaggerated my disability. On the other hand though, the article has also made me sound more competent than I actually am. She obviously wanted a contrast of "one minute in a wheelchair, the next minute fine and able to work in the film industry" or "juggling 5 things at once" which is wrong. It's a daily struggle.

MS doesn't switch off the moment you can get out of the wheelchair after a relapse. Just because I'm walking doesn't mean I'm fine. When I got involved in the campaign they said they wanted to focus on what it was like to be young and diagnosed, and the information and help that was given to me at the time compared with the support you get now. When I was diagnosed, the only two people I knew with MS were permanently in a wheelchair, which gave me a bleak outlook and I wasn't given much information to contradict it because not much was known. With this article, especially by emphasising the wheelchair aspect just for a good story, it doesn't seem much of an improvement. Sure, it's clear that I've managed to raise a happy family (a positive aspect that I know she wanted to focus on) but she hasn't mentioned the amount of support I get and need in order for me to do this, which I made very clear to her. So it's a toss up between giving a false impression that I'm healthier than I am, and yet emphasising the wheelchair and giving a bleaker outlook than is necessary. If I had read this article when I was diagnosed at 18, I would have been pretty confused! 

It's a shame. Like Si said, they obviously have a formula they follow for their articles because they know what their readers like (a bit of drama), and at the end of the day she only had 500 words. At least I have this blog to put some things straight though. It's certainly been an eye-opener, and though I don't regret it, I will perhaps think twice about contributing towards something again. C'est la vie, though eh? :)

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"Say what?!"
(The things written that are untrue/over exaggerations/bullsh*t)

1. I never studied film. I studied a BA in Communication Studies. I originally wanted to do something in film but getting my diagnosis made me 'give up the dream' and be realistic about my options.  Basically I didn't want to put the pressure on myself!

2. I don't get wheelchair bound for months at a time, some sufferers might be, but not me. True, if I'm relapsing and wanted to get out of the house, then yeah I'd probably have to use the chair. However, my MS isn't just about walking. When I'm having a relapse it's a struggle to muster the energy to get downstairs, let alone wash, dress and get ready to go out, whether it's in a chair or not. I hate having to use my chair and would rather not go out. Hence the reason why no one ever sees me in one. Definitely a huge dollop of dramatic license used on this one. 

3. "Simon always jokes that I'm juggling 5 things at once"
Completely made up. Now, if she'd said 'Simon tells me off for trying to juggle 5 things at once' that would have been true! I often con myself into thinking I can do stuff, but then pay the price by being ill for days afterwards (hence there telling off ;)

4. "Just like 'typical' MS..." [Note: this bit was added after I approved the article and I certainly would have made her change it. She obviously got told to add more 'medical facts']
This is the bit that wound me up, and showed her overall lack of understanding. Saying my consultant "explained to me that just like 'typical' MS which affects the nerves in the brain and spinal cord, I would have problems with my movement, balance and vision" isn't true. He didn't say this and wouldn't have done because MS is so varied between sufferers so there's no way of knowing how it will affect you. Obviously dramatic license was used to make it more concise, but saying "like 'typical' MS" gives the impression that having relapsing-remitting MS isn't in some way normal for the condition (like it's a watered down version or something). The way it is worded also makes it sound like having relapsing-remitting MS means you have the symptoms, but not the brain and spinal damage like with 'typical' MS, which of course is not true. The damage is there and scars are left, but it's just that currently my body can do a pretty good job at healing and getting back to some sort of normality, unlike the progressive forms of MS. Relapsing-remitting MS is actually the most common form of the condition (roughly 85-95% of sufferers have RRMS when diagnosed). For a bit more info, you can visit http://www.mssociety.org.uk/what-is-ms/types-of-ms/relapsing-remitting-rrms.

5. "Beta interferon which I'd inject daily, and though it helped...." 
Possibly misunderstood or mis-heard me here, but in reality I tried 3 types of drugs (Avonex, Beta-Interferon, and Copaxone) that were injected either weekly, 3 times a week, or daily. After years of treatment, there was no evidence to show that any of them had helped at all, which was why I came off and had a break. I chose to experiment with the Swank diet instead which I found had a much more positive effect than any of the meds. More info can be found here: http://www.swankmsdiet.org/.

6. "Getting back into film" - this made me laugh! I dabbled in film extra work, and certainly won't be doing any again any time soon because of how much it tired me out, which I explained to her. I do still plan to get into voice-over work when the kids are older, but that's a long way off. The article makes me sound a lot more interesting! :) Truth be told, I'm not going to have the energy to work for a good number of years now until my little peeps are at school. 

and finally....the very worst.


7. I'm 32!! Not 33. The outrage!!!!! ;)


Overall, it did get a positive message across I guess (that I don't let MS control me and I try and live a full life regardless of it) and if it does offer hope to some, then ultimately I'm chuffed.

My advice to all newly diagnosed young people though?

Well, take each day as it comes, and try not to dwell on the future. No-one (whether an MS sufferer or not) can predict what will happen to them, so try and think positively - I know it can be hard. There are so many developments that have been made just in the 14 years that I've had MS (there are now drugs out now that can reduce relapses by almost 70%, as opposed to the standard 20% when I was diagnosed, and there are more effective ones on the horizon), so things are looking up, and being diagnosed doesn't mean a life confined to a wheelchair. You can have a full and happy one; just try and learn to accept having the illness, adapt things so you're not putting too much pressure on yourself and (as my Mum says) "go with the flow". 


More details on the MS Trust 'Making Sense of MS' campaign can be found here: http://www.mstrust.org.uk/help-make-sense-of-ms/