Words

I love words. Just love them.

I did an English degree, I trained as a journalist, I read voraciously. I love language. In moments of stress I love bad language. The more creative, the better.

When I discovered why my body was packing up, I also entered into a brand new world of language. Words like oligoclonal bands, myelin sheath and optic neuritis were both hugely frightening and delightfully musical.

And – in the manner of Carrie Bradshaw – this got me wondering about language and MS.

More specifically, the way people describe the MS community and disabilities in general.

There’s the nicer-sounding words people use while hoping they are saying the right thing. Words like “brave,” “inspirational,” or “warrior.”

They're usually from a good place but can sometimes make me feel like I need to live up to a person I'm just not.

However, they’re a heck of a lot better than “sufferer", "unfortunate” or "invalid." Think about that: literally, not valid.

And, depending on the attitude of the speaker, these are the words that can cause an unintentional drip-drip of damage to your self-esteem or be blatantly slap-in-the-face offensive.

I’ve been lucky, I haven’t been exposed to a lot of language-related nastiness. But there has been one comment that has stuck with me. 

A former colleague once asked me if I was going to have a flu jab. It was autumn time, I heard no warning bells go off, it seemed a perfectly reasonable enquiry. I said I was and received the response: “Oh yes, they give them to your lot don’t they.”

"Your lot." 

Two little words. Just seven small letters implying that I wasn’t with the ‘us,’ that I was somehow different, unusual, exclusive – and not in a good way. 

Not just that, but as if there was some marauding and diseased horde of ‘your lot’ ganging up on the normal, decent, respectable people.

It was a Daily Mail-esque description and made it very clear the damage words can do.

Sometimes poor word choice comes from a lack of understanding, sometimes it's simply a fear of what to say for the best.

But a conscious choice of hurtful words indicates a divisive and dangerous attitude that does nobody any good. After all, if there's one thing we don't need more of, it's division.

So in the way we talk about disability, as well as how we refer to other things in life, we would all do well to mind our language.

:: Words by The BeeGees

These handy guides to inclusive communication have been produced by the Government - it’s almost like they care. 

Somewhere only we know

I've been wondering how to approach this.

This subject our Victorian ancestors might, hilariously, have called horizontal refreshment but one which I like to think needs a bit more maturity and nuance. (Although obviously I am going to use that historical euphemism from now on.)

Yes, it's sex.
But not just sex - sex and disability.
It is, to put it mildly, a complicated mixture:

• the emotions: Am I still attractive? Will anyone still want to sleep with me? What if I do/don't want to do it but my partner does/doesn't?
• the practicalities: Can I still do it? How do I still do it? And even if we're agreed on the cans and hows, what if I am seriously too tired to do it?
• not to mention the stuff you don't initially think about: What if my hands give up halfway through? What if my brain refuses to think sexy thoughts? Not to mention, erm, swallowing difficulties.

Challenging, isn't it? But common. A quick Google indicates that around 50 to 80 per cent of women with MS will experience some degree of sexual symptoms during the course of the disease, along with up to 90 per cent of men.

And bearing in mind MS generally divebombs into peoples' lives in their 20s and 30s – potentially prime sexy time* - and could last for the rest of our lives, what can be done to help?

There's no easy answer, but there are a few handy tips: scheduling sex for when you're least tired (not hugely sexy, admittedly, but practical), trying different positions to avoid physical impacts (take THAT annoying spasms), sex toys (can help with decreased sensation), medication (viagra and synthetic hormones) and being prepared to keep talking and keep trying. The MS Society has some useful thoughts and suggestions.

From a personal point of view, the relapse I experienced after having my daughter successfully knocked out all – and I mean ALL – of the sensation from my waist down. Pretty rubbish.

Initially, however, my main focus was on somehow recovering while also caring for a three-month old who needed a mummy. Any other concerns were taking a bit of a back seat.

But as time went on and sensation didn't seem to be making much of an effort to reappear, hubby and I realised we needed a few frank conversations. And, I think, this is where sex talk (in the medical sense) was really important.

Being able to speak honestly, and with some humour, about what had happened to my body and how it affected us both was really helpful. If there's two of you in bed, then logically there are two sets of feelings to be taken into account. (If there's more than two, the same applies, but you might just need to organise a conference call.)

Talking is always good, it helps rebuild and reconnect after damage. Talking through your feelings about sex – the worries, the fears, the changing perspective - is not necessarily easy, but my view has always been that if you're willing to share your body with someone for extended periods of time, you should also be willing to share your mind.

In my case, while some parts of me took a substantial amount of time to recover, fortunately others didn't take quite as long.

And while the physical mending was a huge relief, it was actually the emotional communication that really helped us through that particularly intimate relapse.

How refreshing.

:: Somewhere only we know by Keane

*Although I'm sure a few older readers will disagree – and I hope they do, it means I will have something to look forward to.