I have lived inside a body with chronic pain for over twenty-five years. You would think that after two and a half decades, I’d have figured out how to make peace with the flares, but they still find ways to catch me off guard sometimes.
This most recent flare has hit me especially hard. It has kept me tethered to the couch for six days straight, stripping everything back to the basics. It’s a reminder of the loneliness we experience during a flare-up; the way life moves at full speed while your body breaks down in the background. People notice the cancelled plans or the way you drop off the map, but they don’t see the reality underneath it all.
They don’t see the hours spent awake in the middle of the night because the pain is too intense to let you settle. They don’t feel the exhaustion sitting deep in your bones. Even basic tasks feel out of reach. Folding laundry. Washing your hair. Rereading a text because you lack the mental energy to explain that you aren’t being distant; you’re just trying to survive the day.
When you’re flaring, your brain becomes a calculator. You constantly weigh the cost of every movement: If I shower now, will I have enough energy to make dinner? If I leave the house, how bad will the “payback” be tomorrow?
The hardest part is that the world doesn’t pause just because your body needs it to. People still need things from you. My husband recently had a bad injury, and with his mobility already limited by left-sided hemiplegia, I’ve been juggling his needs alongside my own failing health. It is an exhausting dance, trying to be the support system you want to be, when you feel like you’re disappearing yourself.
So, you keep going longer than you should. You smile through a conversation while pain knots itself in your stomach. You say, “I’m just tired,” because the truth is too heavy to explain.
Eventually, you start grieving the smaller, everyday parts of your life. You miss the version of yourself that had energy to spare and the freedom to make plans without calculating the cost first. You miss waking up and simply starting your day without having to scan your limbs to see what you’re capable of.
A flare makes your world feel small. Sometimes it’s just you, a heating pad, and a cold cup of tea in a dark room. It’s listening to the rain outside and trying to breathe through another wave of pain.
This life shows you who people really are. You notice who lets you be honest without trying to “fix” you, and who doesn’t guilt-trip you for disappearing when you hit a wall. You find the people who understand that getting through the day when you’re hurting is a massive victory.
If you’re reading this from bed, the bathroom floor, or while masking your pain because you don’t know what else to do, I want you to remember this:
Your body isn’t failing you just because it needs to rest. You are carrying a load most people can’t see, and there is nothing weak about how hard you are fighting to exist inside of it.
Even on the sixth day of being stuck on this couch, I have to remind myself that this state isn’t permanent. As heavy as the air feels right now, this flare will eventually end. The fog will lift, the pain will settle down, and the world will feel wide again.
Be gentle with yourself.
Debra 💛
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