How do you explain what chronic illness feels like? You start with a list of symptoms perhaps, but that doesn’t always help people to truly understand. I want people to have a sense of what living with these symptoms feels like, more than what they are.
Here is what chronic illness feels like to me:
Imagine the home you live in puts you at risk. Imagine you've been told by several professionals that the home you live in is unsafe, despite the fact it looks fine from the roadside. Perhaps it's the roof, perhaps the very ground your home stands on is unstable. Whatever it is - you're not safe there.
But there's no possible way to move, you're tied where you are. You're not allowed to leave even for a few minutes. You have to watch from the window knowing that the very walls around you could potentially be the problem. How stable are they?
There's no way to step outside. You have no choice, or any say in the matter. You are constantly at risk.
Many people don't believe you that your home is dangerous, and they tell you you're exaggerating. But they don't know what it's like when every creak of a floorboard makes you freeze. Is it getting worse? "A new lick of paint" they say, "That's all it needs". I wish.
You try getting help from additional industry professionals. They either recognise there's an issue but are unsure of how to fix it, or they state blankly that you're imagining things. "Everything is solid. It's reading fine on our measurements". Damn. Why can't anyone help me? I need to get out of here.
The government can't help either. They claim they help vulnerable people like me, but it's not true. They don't take me seriously either. "You claim your roof is unsafe. A surveyor has been out to inspect the issue and agrees with you that you're in a dangerous situation. I know nothing about roofs, and have not been to visit your property personally. I have, however, decided your roof is of no threat to you. You must stay where you are". Wonderful.
My body is my home. It's my only home. And I don't feel safe in here.