A Sick Girl’s Guide to Conserving Energy

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I haven’t pressed it too much but… happy Porphyria Awareness Month! The purple ribbon is used for porphyria. In short, I’m allergic to light, my head hurts and my tummy is a mess too. But idgaf, I just play to my strengths and live my life. I can take care of my bunnies, write cool shit, I’m a gourmet cook, I code in 5 languages, I’ve written several books on self-help and spirituality and considered pretty advanced in my field. My work has been published online, in print, and shown in galleries. I think I might be kind of a badass!

Fav way to practice self-love? Not everyone is going to accept your illness: bullies will say you’re faking, or make up weird assumptions that hurt everyone, including them. Information is the way to combat ignorance. Teach others, show

empathy, and protect yourself. Ignore haters and toxic assclowns whose priorities don't align. Self-love isn't just bubble baths and affirmations—it's fierce protection of your peace like Phyllis protecc her hidey-hole from the invasion of humans w/o treats.

When living with porphyria, energy conservation becomes crucial like saving the last can of Rockstar Black. Directing my precious waning time and life force toward dickholes who drain rather than sustain me isn't just unpleasant; it’s unhealthy. It’s unsustainable. It’s like trying to vampire surf at high noon: ouch, that shit’ll kill ya.

Self-love includes celebrating small victories, like getting out of bed without screaming too much or taking all my pillsies (even tho I hate them). It's finding joy in my friends and loved ones, the occasional emotional support candy, soosh, or weed; it’s falling in love each day with video games, my rabbit, and my wordscape which is probz my true soulmate.

It also means challenging. I challenge myself occasionally. Attempting a 5-flight stair run because I want my oldies to hug me when I get there. Talking to a stranger who starts in with "HeLlO BeAuTiFuL" on the apps. Loving and supporting the people who do the same for me. Going on dates where I know the person won't like me. Moving 3000 miles away in a foreign land like California, to start a whole new life. Expecting the best of others when I all too frequently get the worst. These are social exercises, and comfort zone messers-around, but they’re acts of radical self-love too.

I don't think it's fair for me to be the face of porphyria and the representative of rare illness - I don't ask every asshole to be the face of assholery. Real self-love is messy, sometimes feels not great, and sometimes it hurts… it can be hard eating your veggies and not going along with the crowd. It can be taxing to give the mighty finger of Gordddd to others and their selfish expectations.

I like to educate peeps when I’m in the mood to do it and when people want to know ME, not get entertained by misery porn. And when a real teaching moment happens - I’m happy and excited to do so!

Otherwise, don’t fetishize sick people… fuck off with that shit!

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