To the two ladies at the hospital today.

I noticed you, tutting at me. I was within earshot as you sniggered together and commented on how ‘snooty’ I looked.

I was wearing my favourite coat. I know it’s flattering and that makes me feel good.

I don’t go out so often, you see. A trip to the hospital is as much a day out for me as anything. In fact, as those trips are so frequent and my health limits so many aspects of my life I can genuinely say that I spend more time at the hospital than I do socialising.

So yes, I’d made an effort. I wore my lovely vintage leather gloves too; an unexpected gift from a friend, which will always now remind me that kindness exists and that I’m not alone.

And I wore my boots – the ones with heels on. Not going-out-type-heels, but heel enough to give me just a tad more confidence.

I also spent a lot of time looking at my phone. I wasn’t really doing anything, but I couldn’t bear the thought of eye contact or interaction with strangers.

I needed those things, that confidence, distraction and that reminder that I’m not alone because on previous visits to that hospital I have never felt more so.

One occasion saw me literally hiding in a corner, shaking and hyperventilating. Unable to communicate with or make eye contact with anyone.

I probably looked ‘snooty’ then too. In the corner, separating myself from others and not acknowledging anyone. And I’d probably made a little effort then too, to compensate for the crippling anxiety I felt and the fact that I was genuinely terrified even at the point at which I stepped foot outside my house that day. But I made it. I made it to the hospital, I made it through the appointment and I made it home again. And that was an achievement.

Many days are spent in my onesie, unable to raise my arms or hold them up long enough to brush my hair – looking a mess. Do you have any idea how much effort it took to brush my hair today? Or pull on those boots? Or make my way to the hospital that terrified me so previously? Of course not. You don’t know because you can’t see.

I heard you comment on the fact that when I moved to let someone sit next to their partner, I didn’t even smile at them. You’re right. I didn’t. I didn’t even try. I have (amongst other things) dystonia. It’s a condition affecting the muscles. Essentially, the brain can’t control the muscles properly. Although dystonia can affect people in many different ways, for me it affects my neck, shoulder and primarily my face. I think I’m sending one signal (e.g. ‘smile please!’) but my brain goes ‘Nah, let’s do this instead…’ The resultant spasms are painful and exhausting. Whenever the affected muscles are untreated, that’s what happens to my face.

That’s why I was there today for treatment. Without it (and whenever it wears off, which it always does) one side of my face pulls with such force that on the opposite side I now have a jaw disorder which is more commonly caused by car crashes or other high impact accidents. My face has done that all by itself. My unsmiling face. The other side of my face is pulled so tightly that it doesn’t move, so essentially I look like I’ve had a stroke. So yes, I often decide not to smile when otherwise I’d like to, but you don’t know because you can’t see.

I’m also painfully aware that (until I smile or talk at least) I look “fine.” Such is the curse of invisible illness; a significant mismatch between what’s going on inside the body and what others perceive. And while I may flush in embarrassment at the sly glances I spot in my peripheral vision while I’m busy ‘looking snooty’, it’s preferable to that momentary change in someone’s facial expression when they start talking to me, or I smile at them and at the beginning of the exchange they think I’m “fine” and then they see the effects of dystonia on my face and I see a look of pity register in their eyes. I can always see that moment, precisely when it happens. I’m in my 30s, and I’ll no doubt be seeing it for the rest of my life. Even worse than that, people occasionally start redirecting their conversation to whoever I may be in the company of. I am still me, in this misbehaving body! I’m still intelligent, I’m still at heart an extrovert, a warm and friendly person but my body lets me down. Yet you don’t know, because you can’t see.

At its worst, it’s painful to even attempt a smile and talking is agony. I have to consider, before saying a word or even attempting a facial expression whether or not its effect will be worth the pain and fatigue it will cause. Give it a try for just an hour. Imagine that smiling hurts; talking hurts. Spend an hour in someone’s company with those things in mind. Would you mention that Mrs Griffiths from down the road did something hilarious at the local shop? Would you smile when you see someone you recognise in the street? This is me. This is the rest of my life. These are decisions I’ll always have to make. Is chit-chatting with my son, for example, ‘worth’ instant pain and hours of fatigue? Thankfully, he is a more understanding human being because of what he’s seen me go through. It’s usually him who makes those decisions for me, because he knows I’ll (naturally) always put him first. He’ll say “it’s okay mum, we don’t have to talk” when he sees me struggling. I’m so proud of him. He’s caring and compassionate. He understands. Unfortunately many others don’t.

So to you two ladies, although I’m sure you won’t see this post there’s a chance that others like you might. There’s just one thing I want you to take from this, and that is this: please don’t judge; you don’t know, you can’t see.

Lou x