Living with a chronic illness like porphyria is like sleeping next to a cat

Even with the sweetest cat, it’s impossible to forget they’re in the bed next to you.

You can go to bed perfectly comfortable, hoping you’re in for an ordinary night. Your cat is curled up and purring softly beside you, but you can’t completely relax, because you’re always aware of your cat’s presence and what he’s capable of.

You can try to be careful and avoid upsetting your cat, but you still might be jolted awake by claws in your stomach. What woke him up? Maybe you rolled over on his tail and he had a reason to be upset.

Recommended Reading

Feb. 26, 2026 Columns by Kalyn Shelton

The importance of being able to explain our porphyria symptoms

He’s a cat, though, and there may not always be an obvious explanation for why the claws came out. Did he smell something interesting and he used your stomach as leverage to run across the room?

Learning to live with porphyria is like learning to sleep beside a cat. Which is to say, there is no learning to live with it. There is just anxiety and waiting for the claws to come out.

Sure, there might be long stretches of peacefulness. There might be weeks or even months without an attack, but between those stretches, porphyria is always there in the back of the mind, and I’m always wondering when it will attack next.

With porphyria, it’s not just the attacks that make life difficult. It’s knowing that even when I’m feeling well, the possibility of another attack is still lying beside me, and there isn’t much I can do about it. It might be sleeping quietly for now, but it could pounce awake, claws out, at any moment.

For no apparent reason, I’ll be jolted awake in the middle of the night with severe abdominal pain that quickly gathers momentum, picking up other symptoms as it snowballs.

I can try to recognize and avoid the triggers. I can try to placate it and keep it from happening again. But sometimes, I still don’t know what will wake it up.

Maybe there was a trigger I didn’t notice. Maybe it was something so ordinary that I wouldn’t have thought twice about it. Was it that cloud of cigarette smoke I accidentally walked past outside the grocery store?

Sometimes, there is no obvious explanation. Maybe it was stress. Maybe I hadn’t eaten enough. Maybe it was a hormonal change.

That might be one of the scariest things about porphyria. I can go about my day. I can learn about the known triggers and try to avoid them. I can even pay close attention to my body and look for what causes my attacks.

I can do everything possible to keep the cat sleeping and happy. I can make plans. I can work, go shopping, and do all the ordinary things I need to do. But porphyria is always there next to me, and I know that when the cat wakes up, my body is the room he tears through.

I’ve learned to appreciate the quiet nights, and I’ve learned not to take the peaceful stretches for granted. But I know that feeling well doesn’t mean porphyria has disappeared. It just means the cat is sleeping. Even on the nights when the cat is quiet, I never quite get comfortable.

Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.