Month: July 2018

On my soapbox. Literally. (Part 2) 

Before reading, if you missed Part 1 you can catch up here! It’s also important to note that the topic of this blog is focussed on Relapsing Remitting MS.

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The day after my previous blog about Corrie, I was reading some spoilers (one of my favourite past times!) so I knew that Johnny becoming unwell was imminent.

During Friday’s episode, following being caught having kidnapped baby Suzie, we found Johnny in hospital. He’s not doing so well. He’s not doing well because he’s not been taking his medication for his MS for weeks. And this is where I think Corrie have got it a little wrong. 

It’s great that Corrie are finally remembering to do something with it, but I feel the need to clear up a couple of “misrepresentations”. 

Misrepresentation One: Johnny is only having a relapse (new symptoms) because he’s stopped taking his medication.

This is inaccurate. It’s not entirely clear what medication Johnny is on, but it’s easy to work out he’s on a daily self-administered medication rather than something like Lemtrada (which if you’re a regular reader, you’ll know is how I’m managing my MS). 

No medication is proven to completely stop relapses. The only thing it will do is slow them right down i.e. reduce the frequency in varying degrees of success. That means you can still have a relapse regardless of whether you take your medication or not. Of course, it is more likely that you will have a relapse if you don’t take your medication, but the reality is, no medication is 100% effective.

Misrepresentation Two: Johnny experiences no  MS related pain or problems as long as he takes his medication. When he’s between relapses, he’s completely fine.

Again, this isn’t a fair portrayal of MS. Once you’ve had a relapse and got yourself a few new symptoms, they never really 100% leave you. It’s rare to be symptom free. The extremity of it usually eases significantly after a relapse, but depending on what it is and how it affects you, it lingers. 

For example, my legs have “tingled” for eight years. When it first started, it was an awful numb feeling through my entire  body from the waist down. I had no sensation. Since that relapse, sometimes it can be all the way up to the tops of my legs and even into my lower back. Most of the time it’s a light tingle I barely notice, that doesn’t go further than between my feet and my lower leg. At other times it can be on the verge of pain. Heat can be a factor in making it “flare” as can tiredness or picking up infections. Oh and you guessed it, stress (amongst a whole bunch of other things).

It could be argued that Johnny has clinically isolated MS or it’s not that active or serious. But if that was the case, chances are he wouldn’t be medicating in the first place. It just doesn’t add up.

I get it must be hard to explain an invisible illness. How do you portray something that nobody can see? There are ways. People could simply ask Johnny how he is from time to time and he could complain about an invisible symptom. He could have the occasional bit of poor balance or walk with a limp. 

I’ve said it before and I’ll say it again. Soaps are well placed to raise awareness on all issues, I just wish that when they do give somebody something that’s a lifelong condition, they do more than just remembering to portray it when it suits them, or it fits with the storyline.

Hidden.

Shift.ms have worked with directors to produce this short film (10 mins ish). 

The story is of a girl who is experiencing the hidden symptoms of MS. She’s not diagnosed and the doctors say there’s nothing wrong with her.

Her next door neighbour however is diagnosed with MS, and her son spots the girl struggling and asks his mum to speak with her. Once she knows she has MS she’s able to manage the “beast” that she’s dealing with.

The scene with the stairs is a great visualisation of what it can feel like trying to make it upstairs sometimes, and the struggling with the wrists when the mother is working on her laptop. You also see the mum zone out of the conversation with her son. All of these things really resonated with me.

If you’ve got 10 minutes to spare, it’s definitely worth a watch.


 

On my soapbox. Literally.

I’m an avid follower of Coronation Street. I’ve watched it on and off over the years but I would definitely say I’m in my most devoted phase to it ever at the moment. I just got so caught up in the Pat Phelan storyline!

But something has annoyed me.

In June last year, not long before I found out I might have MS, they decided that one of their characters, Johnny Connor, was to be diagnosed with relapsing remitting MS. The same as me. 

For those of you that follow Corrie, you’ll know that Johnny has had a tough old time of it recently. His son took his own life, his poor wife couldn’t do right for doing wrong and it was clear their relationship was at breaking point from the stress of it all. His family business was left to someone outside of the family in the will. Then if life couldn’t get any worse, his son’s ex gave birth to a daughter who she gave away to her half sister’s sister. Or something like that. Anyway, Johnny now knows the identity of said baby and is trying to fight for custody of her and is apparently ***SPOILER ALERT*** going to kidnap said baby imminently. Oh and there’s still the tiniest chance that the baby isn’t even his grand daughter. 

Are you still with me?

Anyway. Although I’ve said time and time again, MS affects us all differently, I can more or less say with confidence that the vast majority of MSers would not go through his level of stress without experience of a flare up of symptoms, or a full-scale relapse. 

Now I don’t really want poor old Johnny to have a relapse. I wouldn’t wish that on anyone. But what I do want is for Corrie to have the decency to portray an already misunderstood illness with a touch more accuracy. It seems to me that Jenny (his wife), who at the first sniff of him getting stressed, dramatically shrieks at him to “calm down Johnny, you’ve got Multiple Sclerosis”, is the only person that remembers that he’s got it!

I did ask in a group on Facebook with other MSers their thoughts on this. I got quite a big response from people who had been wondering the same thing for weeks. A couple have suggested that they normally relapse after the stressful event, but my argument to that is that the first stressful event was the unexpected loss of his son. Which was weeks ago. Surely by now we’d be seeing some fallout from that? 

It will be interesting to see what happens to Johnny in the coming weeks – he may be one of those that can hold it together through the stress, and then will fall apart once he doesn’t need to hold it together anymore. Or maybe it will just get forgotten.

Johnny could be somebody who has really inactive MS. Some people have it but it’s years between relapses. My question is, what are they (Corrie) trying to achieve? If it’s an awareness of the illness, although it’s useful to be aware that some people are diagnosed with MS and it never really (or very rarely) resurfaces, I feel that right now it’s not the right balance. If you want to tackle an invisible illness, you need to give it a bit more than somebody reminding the character, and viewers what he suffers with just because he’s got a bit stressed. 
In my view, soaps are in a unique position and have a social responsibility to portray these issues. I just wish they’d do it accurately.

I’d be interested to hear the thoughts of others with RRMS on this one! We’re all different so it’s always good to get another perspective!