The Cost

My days look like waiting rooms. We talk about the literal cost so often we fail to see the other ways being chronically ill and disabled cost us.

Trying to squeeze these appointments in while working a full time job, hoping I'm not pushing my luck with each ask. Meanwhile knowing full well that being sick IS the full time job too. 

Taking the non diagnosis. Having the “everything is normal” conversation in stride because you’ve heard it a million times before, yet your body still screams in pain. So you try the new meds, the fifth new med, the new test, another procedure, the eighteenth doctor, managing care, notating symptoms…The mental load it consumes occupies an amount of space that leaves room for little else.

Navigating healthcare plans and policies. Meeting your maximums in April only to be at the mercy of your employer changing them mid year. Wondering how you’ll ever catch up with each years rising cost, let alone have to pay a deductible twice in one year? Applying for financial aid and hoping you get accepted, but the paperwork and process is designed to be so complex that people don’t apply. So you have to ask someone to help advocate for you.

Things I want and will eventually need seem too far a concept to fathom. A home, a car, savings, vacations, fuck will I ever even retire?

Friendships and relationships frayed because you had to kill the part of yourself that put everyone else first. Somewhere along the way you saw that prioritizing yourself (or even finding the happy balance between the two) somehow meant less people surrounded you.

Life is quieter now. Who you thought would surround you isn’t, but losing everything you thought you knew opened up spaces for the quiet observers in your life to speak out and allowed space for new people to come along. Life looks so different now, You’re not alone but you still feel alone most days.

So your days are strung together through little hits of dopamine. Never concretely planning a future because “What if the diamond days are all gone?” But hoping for things all the same. 

The cost is high. It is one I struggle to pay every day and most days I wonder if it’s even worth it. Life will never be the same. It may ease, it may stabilize, but this is how it is, how it has been since I was 15. So I pay what it costs.

I hold out for one good day, and then another, and hope that’s enough of a spark in the often overwhelming darkness. Until then, days are waiting rooms where hope sits besides me and waits too.