"I'm not fine"

“I’m fine.”

We all say it when asked: “How are you?”. My standard reply is “I’m fine” even though I’m clearly not. But who wants to hear the list of my ailments? I certainly don’t fancy rhyming them off.

If I start with ataxia (one of my many symptoms) I would then have to explain what that is: I think of it as general clumsiness. Spasticity is the muscle stiffness I can get, and the arm or leg movements are actually called spasms. When I say I have vertigo, I don’t mean I have a fear of heights. Go on, Google it, you’ll be surprised at its true definition. The NHS describes it as “the feeling that you, or the environment around you, is moving or spinning”.

It’s easier just to say: “I’m fine.”

I’m not drunk

Yes, I sound drunk. I may stagger and look drunk, but honestly, I’m not. Chance would be a great thing, but alcohol and my meds don’t work well together! I’ve seen a t-shirt displaying the line: ‘I’m not drunk, I have multiple sclerosis’. I’m not a wearer of t-shirts with slogans, but that line says a lot, as does the slogan ‘In my defence I was left unsupervised’, which I’ve also seen printed on t-shirts.

But I digress (my symptoms do include problems with cognition).

People see me in my wheelchair and most of them say nothing, which is great. But there are others who ask: “What’s happened?”

Thinking out loud 

If I know them, I reply: “Nothing, I have MS.” If I don’t know them, I used to say: “Shark attack!” That shut them up! But now I direct people who ask to Ed Sheeran’s song Thinking Out Loud, which contains the lyric: ‘When your legs don’t work like they used to before.’ That’s me in a nutshell, as my legs don’t work properly anymore.

It’s time to accept that I’m not fine. I’m not. I have an incurable (at the moment) autoimmune condition, one that has stolen me from me. That’s not my idea of fine.

What I need is a quick, understandable way to say that, yes, I have MS, and its long list of potential symptoms, but I’m coping.

Read about MS symptoms

It may be that saying “I’m coping” is more accurate and truthful. It may be the way forward! Saying “I’m coping” acknowledges that there’s an underlying condition that I’m managing without going into too much detail. It says I’m unwell, regardless of how I look.

“How are you?”

“I’m coping.”

That’s quick, understandable, and to the point.

That’s it, I’m now adopting that as my new response!

The worst kind of lie

“I’m fine” is a lie. It is. I’m not fine. I’d be lying to whoever asked the question, but, more importantly, I’d be lying to myself. And that’s the worst kind of lie.

We’ve been conditioned to say “I’m fine” like we’ve been conditioned to cover our mouths when we cough. Let’s break the chains and face up to it, we can say we’re not fine, but we’re coping.

If people are more aware of how we’re feeling, and what we’re experiencing, it would give them a better understanding of what it can be like to have MS. And then we might be more inclined to explain how we really are; to be more honest. And that would feel like a weight off our shoulders.

I know people don’t always want to hear: “I feel like shit.” But sometimes that’s how I feel.

To say “I’m fine” is like Monty Python’s Black Knight saying “tis but a scratch” when his arm is cut off.