Speak up

Invisible illness is tricky.

Looking fine when you’re not is complicated. Not just fine, but shiny and bright.

I’ve lived this reality for most of my life, but lately it’s become increasingly hard.

It’s easy to feel misunderstood. And lonely. It’s no one’s fault. People don’t know what they don’t know.

It’s forced me to do something that has made me uncomfortable for years.  

Now, I have to ask for help and tell people what I need.

As a kid, my ileostomy didn’t require me to do this very often. Or, my parents did it for me.

Lately, as my mobility declines, my MS is making it necessary to ask for adaptations and accommodations. At first, I felt less independent. I also worried that people were thinking that I was over stating needs or I was weak. I don’t look like my legs are burning when I stand so why do I need a special seat? I used to suffer in silence and need two days in bed to recover from an outing. Stoicism started to feel stupid.

The more I ask for what I need, with positive results, the easier it gets. It’s also been a way of keeping independence, not losing it. Feeling seen and heard has been a powerful benefit too.

It’s nice to look shiny and bright, but even better to feel that way.