Monday 29 February 2016

Reports of My Impending Demise Have Been Greatly Exaggerated

Recently I wrote an article for Oh Comely Magazine for which the introduction mistakenly read ‘confronted with a terminal illness my first question was how to make it funny’. I’m writing this blog post to emphasise that the word terminal really was used by mistake. I’m not terminally ill. I’ve never been terminally ill. I wasn’t diagnosed with a terminal illness in 2012 from which I’ve staged some kind of miraculous recovery. In 2012, I was diagnosed with Multiple Sclerosis, which is a chronic illness, not a terminal one. I’m not going to die. Well, I mean, obviously I’m going to die, I’m not immortal. I will eventually die of something, but that something will most likely be falling off my clogs into oncoming traffic or in some other preposterous way that you will ultimately feel bad for laughing at when you see it on the local news. I may even eventually die of a terminal illness but that illness won’t be MS because, as I hope we have now established MS isn’t terminal.


if you work for the local paper you can use this picture for the article
you will inevitably write titled 'Women dies in clog related accident'
    



Okay cool, now the ‘I’m not dying’  segment of the blog post is out of the way we can move on to the other thing I wanted to emphasise is that the word terminal really was a mistake and an understandable one. It’s understandable because magazines are pretty hectic places. Somewhere between me submitting the article and the magazine going to print the word terminal was added. These things happen. It’s also understandable because generally speaking, people  don’t know a lot about MS. Often when I tell people about my chronic illness the thing people want to know is if it’s terminal. They don’t always  out and out ask, but they ask you with their eyes and the tilt of their heads.  

MS is an illness that you often see portrayed inaccurately in soaps and sensationalist newspapers.
If you aren’t a medical professional, or not intimately involved with MS, most of what you do know about it is probably mad nonsense; let’s establish a few basic facts:

Fact One: MS stands for Multiple Sclerosis

Fact Two: There is more than one kind of MS,I have the sort called Relapsing/ Remitting ( the clue is in the name –the symptoms come and go)

Fact Three: I am a 24-year-old arts graduate who tries embarrassingly hard to reference the Spice Girls in everything she writes.  There are probably much better places than my blog to go for hard facts on MS. Like The MS Trust  or The MS Society

You were about to take life advice off this person.

I can tell you a little bit about what it is like to have MS, with the caveat that it affects everybody differently. My experience is by no means typical and (at the time of writing) my symptoms are at the mild end of the spectrum. Having MS is basically shitty. Nobody in the history of the world ever said “Oh good, I’ve got an incurable, unpredictable illness; that’s going to make my life immeasurably harder than it would have otherwise been. Still, at least it will keep me on my toes!”

Having MS is frustrating and unfair. It changes the way you move and the way you think. It changes the decisions you make about your life, in the long and short term. Sometimes it’s funny; sometimes if you have Relapsing / Remitting and like me you are lucky, you can almost forget that you have it at all. MS is part of your life forever, but it does not define you or fundamentally alter who you are. (Also just so we are super clear, it doesn’t kill you!). 

I’m the kind of person who makes hard things into jokes so that I can deal with them. That’s why when I write about MS I generally make light of it. Not everybody is going to want to do that. MS is a weird and wide-ranging illness. It affects everybody differently and everybody deals with it differently.

I’m a big believer in using mistakes as an opportunity to learn. I hope that if you are reading this, you take the opportunity to obtain first- hand insight into MS, from a reputable source. You really would be doing a favour to every person who has it.

              

3 comments:

  1. An important distinction. It sounds like you are meeting the challenges of MS bravely. Here's to a long life, free of terminal illness!

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  2. Hi Letty! I found your blog after posting with you on the NaNoWriMo site. If you're interested, my blog is at

    www.BellaOnLine.Com/Site/yoga

    ReplyDelete