People may not understand how invisible illnesses disrupt our everyday lives – precisely because they're hidden. Louisa uses poetry and storytelling to describe her personal journey with sleep apnoea.
I’ve always been a bit quirky. I like being unusual but there are drawbacks.
I was recently diagnosed with sleep apnoea. This condition most commonly affects large men, so being a petite woman did not help my case. Sleep apnoea means that every night I stop breathing several times an hour, sometimes for up to three minutes. I used to have dreadful dreams and wake full of stress hormones; my body was on red-alert because it couldn’t get oxygen. Sometimes that feeling stayed with me all day; it was difficult to calm it down. I felt out of synch. Over time this chipped away at my resilience so it was harder to deal with challenges, even everyday ones. Left untreated sleep apnoea has other serious health implications, such as heart attacks, strokes, and Alzheimers.
It was scary not understanding what was wrong and having little hope. It took years of fighting to be heard and many doctors visits. Fighting is hard when you feel ill. But I know I am not alone.
Fortunately I didn’t stop asking and kept trying to tell people what it was like. I am so grateful for two patient friends who listened and believed me. They didn’t give up, no matter how many times I got down, or how long it went on. They supported me to get the help I needed and eventually I received treatment.
Every night I now go to bed with a CPAP machine which blows air into my face and keeps my airways open. I call him Donald. Life with Donald is a whole new chapter and takes a lot of adjustment, but there is support out there for this too.
Support is available from www.hope2sleep.co.u
© K L Aspden www.writefromthesoul.co.uk
Do you have a Hidden Story you'd like to share with us?
We'd like to know how your invisible condition has affected your day-to-day life, and hear of the kind gestures or dismissals you've experienced along the way. Or can you offer a perspective as a friend, family member or carer? Or as someone who now feels differently after learning about someone's experience with an invisible illness?
The stories we collect will form part of our Hidden Stories project, which is about exploring – as a community – the way we behave towards people with conditions and illnesses which can't be seen. Only by sharing our experiences can we begin to understand them.
Get in touch with Jessica (email@example.com) and we'll help you to (sensitively) share your story and find support if you need it.
Join our support group on Facebook
We've started an online Hidden Stories community for those living with or affected by invisible conditions and disabilities. As a closed Facebook group, it’s a safe place for sharing stories, asking questions, and for mutual support and solidarity – amongst people who really know how you feel day to day.