The Facebook Post I Made to Reveal the Parts of My Gig That Went Unseen

Yesterday I took a risk and posted a personal post and video on my Facebook page. I was very honest in it and it felt scary. But I had some responses from people saying it had helped them.

Attached to the post was a video of me, sitting on a chair singing at a family member’s birthday party. I am dressed up, surrounded by musical equipment and in the video I appear as a healthy person playing a normal gig.

Here are the words which accompanied the video:

This is more than I’ve shared publicly before and to be honest, I’m nervous about it. I’m going to let you into my world a bit more. The video (taken last night) is like a small snapshot of my old life before fibro. My words here are my main life now.

 

I’m writing this for all of you with invisible illness. To raise awareness of the unseen. To try and help people to think twice before they make assumptions or judge. This is not a pity post. I’m not after a sympathy vote. There are people a lot worse off than me. I know that. I have fibromyalgia, and though at its worst it can sometimes feel like I’m dying, I’m not. I have perspective on that.

I really want to talk about the seen and the unseen. I think it’s important. This seems a good opportunity.

So.

Yesterday I did a thing. I went to a family party. And I sang. Singing is a passion of mine. Always has been. I don’t do it much at all now. As much as it nourishes my soul to sing it also absolutely drains me. But man do I love and miss gigging with friends!

My daughter filmed this on my phone. I am aware I appear normal, healthy and fine. You see a woman sitting down singing a song. What you see in the video is what people saw.

But that’s not the whole story.

What isn’t in the video is the two days in bed before the party. The extreme pacing myself I had to do. The massive anxiety that I would ruin it because my neck has been in spasm which tightens my throat.

What can’t be seen is the burning TMJ pain behind the smile. The fear I might drop the mic because my hand hurts, tingles and can go weak.

What isn’t in the video is the wheelchair I used to get to the venue and out again.

You can’t see the heat pads stuck to my body under my dress, or the muscle relaxants and pain killers I took (which didn’t help very much and gave me stomachache).

You can’t see that it took me 10 minutes to get up the stairs crawling/dragging myself when I got home.

You can’t see my daughter then helping me get undressed and into pajamas.

What you can’t see is me propped up in bed with pillows, electric heat pads and vibrating with pain and adrenaline at home after the party. The video doesn’t show my husband bringing me a bowl of hot water because I can’t get to the bathroom to wash my makeup off at the sink. My legs wouldn’t even do two steps.

You can’t see that even though I was exhausted I found it very hard to sleep thanks to pain and the sleep disorders associated with fibro.

I am paying a big price today and probably will for a few days at least. I seem to have been in a cycle of flare-ups for a long time now.

You didn’t see my husband lifting my drink with a straw into my mouth this morning because my hands wouldn’t work and I couldn’t lift my head.

You can’t see the tears of frustration at another wasted day because of fibromyalgia and all its life-sucking symptoms, while I berate myself as I should be grateful I had a few hours out.

You can’t see the guilt that I’m not able to play with my daughter or support my husband with household stuff even though he’s been working a heavy laboring job all week.

You can’t see the nausea I’m battling today.

You can’t see me dictating this to my phone to save my hands and stumbling over my words.

You can’t see my arms and legs itching like crazy because fibro plays havoc with your nerves and an itching sensation can be part of that. You didn’t see my husband tell me off because I made my leg bleed from scratching and he says he’s scared I’m going to rip my skin off. You also can’t see how painful it is for my hands to scratch and how this viscous cycle of unbearable itching will mean that my hands will be even worse tomorrow.

Maybe I should’ve stayed in. Maybe. But I loved being part of this night in spite of the physical cost. I get very depressed at missing so many social things.

That’s my rock star husband on electric guitar and one of my best friends on the acoustic. I want to do this more, but in reality I will only get to do it once or twice a year, if that.

If you are not chronically ill and you see someone who is chronically ill out and “looking fine” – just remember there’s a lot you don’t see. Think about what it might have taken for them to be out and think about the reality that it will mean consequences later for them.

If you are chronically ill, do what you can to feed your soul. Pace yourself. Reach out to someone you trust. Speak out about invisible illness if you feel able. I know it’s hard. I myself often wonder if people see me on the rare occasion I might be out and have opinions on how sick I really am. I’m sure some do. But if we don’t speak out, then who will?

After reading this please don’t feel sorry for me. Instead, smile at the person who doesn’t look ill and is using a disabled parking space. Don’t judge.

Be understanding if your chronically ill friend has to cancel a plan. Be kind. At the risk of sounding like a meme: You never know what somebody might be going through.

We want to hear your story. Become a Mighty contributor here.