This is the jewellery I set out for my friends wedding reception. I had the outfit sorted, smartish but also comfy. Showered, fresh, teeth brushed, wax in my hair. But I didn’t go.

There are so many reasons why me, a chronically ill, anxious Autistic person, can’t show up to events. Events I really want to, to see people I love.

I tread the line of constantly balancing my want for spontaneity, my need for knowing all the details, and my chronic fatigue and pain.

Sometimes those reasons and experiences are overlooked – it’s more about the feelings of the person(s) who were let down and I get it, believe me I do. It’s frustrating when you look forward to something and then it changes, especially when it’s last minute. You wanted to share time and space with someone – maybe a really important time or event in your life – and then it changes unexpectedly.

Why do I struggle to leave the house?

The steps to going out somewhere are varied and some days they are just insurmountable for me.

Showering, getting changed, finding clothes (especially trousers) you can get on and off easily. Shoes that look cute, match, and won’t kill my knees. An outfit that will allow me to have the right temperature throughout without the need to carry a massive coat or giant bag of stuff. I am always hot and if I drink or eat it raises my temperature to exceedingly uncomfortable levels. Then people comment on my red face – yeah, cheers.

Then there’s other decisions I have to make: perfumes, deodorants, roll ons. Am I wearing make up? Will it stress me out? When can I take my evening meds (I’m bad at remembering those as it is).

Of course, it is never easy leaving a house with a three year old. He is either nonchalant as I kiss him goodbye or cries non stop when I go. Either way it pulls at the heartstrings. Mum guilt adding to anxiety and excitement.

Through all of this I need my body to stay loyal to me. A difficult task when so many of my chronic illnesses are made much worse by anxiety. If I don’t know who will be there, for example, this can very quickly turn into endless trips to the bathroom. If I worry (or am too excited) about an event this can cause headaches or their evil cousin: migraines. And my migraine meds aren’t going to do much if I can’t keep them in my body.

When your neurodivergent and chronically ill friends, loved ones, colleagues or others do not turn up to events, please don’t assume we are flaky, or didn’t want to come. It will most likely be that we are too excited or anxious (these two feel quite similar to each other!) and that has flared something for us, physically or mentally. It is super annoying and usually quite painful for us too. It doesn’t feel nice to feel like a let down, burden or bad friend.

If someone was asking me what to do if they had issues before going out, I’d quite likely tell them to stay home where it is easier for you body and mind to do it’s thing in comfort and with dignity. My friends and loved ones would say this too.

Don’t close the jewellery box just yet

Sometimes I sit and mourn for all the jewellery I never get to wear but I know I’m lucky enough to be connected to others who understand. Others who don’t see this as a personal failing or rudeness. Others who also need to make this tough decision over and over again.

I’ve missed a lot of events over the years and some of those have cost friendships and that’s a hard thing to experience.

However, I trust myself to make the right decisions for me and for others who have invited me somewhere. We can’t party in the bathroom, I’m not melting down in public, I’m not mixing pain meds with anything else, and migraines are not a group activity.

Tonight I put the jewellery away but the box isn’t locked. Maybe I’ll get to wear my trinkets soon, in the mean time, rest, recovery, and a cup of peppermint tea.