‘Stop apologising’: What those of us living with chronic illness need to remember
It’s time to talk about it.
I rolled out of bed one Sunday morning and made it as far as the hallway before my whole world started to swirl and I was falling. Logic tells you that once you reach the floor the falling should stop. Even though I knew I was lying on the floor, my stomach kept lurching. I frantically tried to grasp at something, anything to stop the sensation. It didn’t work.
And so began the last five years of my life living with Migraine Associated Vertigo – basically instead of getting the pounding headache we normally associate with migraines, you get – I get – vertigo. The problem is that lying in the dark, going to sleep and waking up the next morning doesn’t fix this type of migraine.
I spent months lying in bed 24/7 feeling like I was falling. Every sound, every movement, every switch of the light – made it worse. There was no alternative. I had to take serious medication and begin the ascent up to being able to stand millimetre by millimetre, month by month. And here’s the thing: as difficult as the physical experience is, beneath the surface there is a much bigger game unfolding. One nobody talks about. It’s your emotional free-fall and the ways you are trying to hold it all together inside.
Like millions of women living with chronic illness and invisible illness, I’ve had to navigate not only the physical condition, treatment, drugs and side effects, but also the really hard stuff. Like trying to manage my career, deflecting the unhelpful ‘helpful advice’, creating some badass boundaries in all my relationships. Plus the heartbreaking stuff like missing my best friend’s wedding.
So what do you do with all these feelings and circumstances? How do you find a way through?
Learning to live with chronic illness is a work in progress. Here are the most important lessons I’ve learned:
