Having a complicated chronic illness is difficult enough for those who try and understand their family members or friends illness. After all, how can someone, who was once active and in employment, now have no energy to give, even to their friends and family? How can they be the same person who was up for most things in life, and now has no motivation?
When an illness takes grip on you, it can be so very hard to explain how it affects your mind as well as your body. An illness that has no outward physical manifestation, that is little understood in the medical world, is going to ground down those around the sufferer, not just the sufferer themselves. I’ve met people via social media who have lost friends and family, even had marriage breakdowns, because of the lack of understanding of this ‘different’ person they see. And yet it is the same person.
You may have heard the word ‘spoonie’ when a person with a chronic illness describes themselves. It’s an odd word, but with a great way of understanding the effects of chronic illness once you know the story behind its creation. It was started, unintentionally, by Christine Miserandino, whose friend really wanted to understand how Christine’s chronic illness affected her everyday life. Here’s the link to Christine’s story on her website But You Don’t Look Sick?