There are millions of us. Some stats say hundreds of millions.
You might not know who we are by looking. But there’s some telltale signs once you know how to see.
We’re the ones that more often than not take the seat. In the park, sitting. Leaning against the tree. Propping ourselves up by the wall.
You might also know us by our absence. Appointments missed, cancelled, forgotten. No shows at social events. A little aloof or non-committal…avoidant even. Slipping out after an hour or so. We’re rarely the last to leave.
We’re often wearing clothes that would never need ironing. Soft, easy to pull on, tags removed. Creaseless trousers. Sweat pants. A stretchy top. Shoes that you can walk in.
We’ll smile sometimes, but not always and not as broadly as we’d like. Sometimes we have to save up our smiles – the energy it takes to animate – for only when it’s essential.
Often our eyes are heavy. Dark circled. Dull, as though covered by a film. Sometimes our eyes are puffy or bloodshot. You might wonder if we’ve been crying. We usually have.
We might suddenly need to leave. This isn’t personal. We’d stay and play if we could. How we’d love to linger.
But there’s somewhere else we need to be. And it’s urgent.
This might be our sofa. Our bed. Or a warm Epsomed bath. Or sometimes it’s our head on our desk. Our car. Somewhere we can safely sit and sink.
Other times we might be trying to work out where the nearest bathroom is and how much time we have. Not always. Not everyone.
We may speak vaguely and seem distracted – as though we’re slightly confused, mildly irritated or even a little drunk. Again this isn’t personal. We’re in the fog. It will lift. But it can take a while.
You might think we choose not to wear makeup and have undone hair. And sometimes we do. But other times…there are short cuts we must take to make it out the door at all. Even when we do look well, this might have taken all we have. We washed our hair and blow-dried it. So there’s nothing now left in the tank.
And every now and then you might catch us running, laughing, full of verve…silly, frivolous, fun. Some days we are super fab and up for it. There are moments our eyes flash with “I’ve still got it” or “things are not so bad”. Don’t be suspicious or even confused. This is a contrast we know too well. It never lasts. Don’t be seduced.
And if there was a time you were up for listening to us speak of it, you might hear:
“some days I have to weigh up whether the cost of picking up the butter knife to butter my bread is worth it. Sometimes the pain is just too great. So I have to leave it there.”
“I’m embarrassed about always having something wrong. There’s always something. I’ve stopped telling people anymore. I feel like such a moaner so I keep it to myself.”
“Most people don’t know I’m unwell. They just think I’m unreliable. I can’t explain to them what’s going on. I don’t have the energy and it’s not something I want to be known by. But it’s at the stage of effecting my professional reputation.”
“I don’t know what I have to offer anymore. I’d like to find a partner but now, like this, how realistic is it? What would I say to them? Would anyone really be up for me as I am?”
“A friend said she was worried about me. But that was it. She seemed frustrated that I wasn’t who I used to be. I felt like I’d disappointed her somehow. Or let her down. We don’t really talk anymore.”
“The whole family suffers. It’s not just me. We’re all exhausted now. We’re all impacted. We’re all bearing this weight.”
“My physio told me it’s not a real thing. It’s not something to believe in. She called in a junior physio to watch how much I “overreacted” to her working on me. The junior started laughing. My physio said “I know, right! I’m hardly putting any pressure on her at all!” and they laughed some more. I started to cry but I don’t think they noticed.”
“Sometimes I wish you could see how I’m feeling. Like I wish my arm would be swollen and bleeding or something. So it wasn’t invisible. It feels like another burden, having to explain myself, having to describe it. And sometimes even having to convince others. Educate them. Put up with their resistance. I just can’t do it.”
“When things are really bad I lie in my room and don’t come out for a few days. No-one really knows as I don’t have a flatmate or a partner. I just get through it. Until the next time.”
“Every time I go to the doctor’s I feel ashamed. I’m so reluctant to mention my symptoms or concerns these days as in the past they’ve always said “well that’s just part of it, not a new thing. You’ve just got to accept it.” But now I don’t know whether I’m sick or whether it’s just another symptom of it.”
“A friend offered to buy me a cooked chicken and drop it around as I was having a flare. I felt overwhelmed and said, ‘the thing is, I’m going to need a cooked chicken on and off for the next thirty years’.”