A couple months ago I stumbled across the recording artist BLU Eyes while searching for new music. For me, music speaks when I can’t find the words and this particular evening I didn’t have the words to describe the exhaustion, grief, and loneliness that are inherent parts of this chronic illness journey, but BLU Eyes did. She herself has struggled with chronic illness and therefore her raw lyrics give voice to the lived experiences of those of us living with “invisible illnesses.”

In her song, “healing hurts” she sings,

But healing fucking hurts sometimes
I wish I would’ve known
I probably would’ve closed my eyes
Waited till it was all over
It gets better till it just gets worse
A full time job isn’t this much work
I know that I’ll survive but
Healing fucking hurts sometimes

I haven’t “worked” in the traditional sense of going to a 9-5 job since November 2022 and yet I have never worked harder than the last 2.5 years of my life. I spend way more than 40 hours a week working on my health all in an effort just to maintain a functional baseline. I’m working over 40 hours a week to stay sick. Hence the post title.. I am working harder and definitely not smarter. None of the meds, treatments, therapies, stretches, red light, breathing exercises, etc that I spend hours each day on are curative as there are no cures for my illnesses. Instead, I spend hours a day doing things to help me maintain my “functional baseline” in the hope that doing so means I’ll have more days my illnesses are a passenger on the bus and not driving the bus. In fact, some of the treatments I do actually make my symptoms worse in the hopes that eventually they will make my symptoms better.. I’m talking about you, vision therapy.

I can assure you I am working harder now being on disability and unable to work than I ever did as a teacher. Besides the above mentioned daily hours I spend at appts and running my own wellness rehab for my body at home, I am working to love a body that feels like it’s fighting against me every chance it gets. I am working my way through grief that many days feels like a tidal wave that might just swallow me up. I am working to love a life that looks nothing like a life that I really loved and miss. I am working to recognize the person in the mirror staring back at me as she’s been through so much the last 2.5 years she sometimes feels like a stranger. I am working on living, loving, laughing, and finding joy through it all.

This is not a full time job I want, I enjoy, and/or that I find easy. I would give anything to be back in a classroom and many nights I find myself trying to bargain with the universe to just give me my old life, my old body, and my old full time job back. The whole acceptance part of this healing journey is still very much a work in progress.. send good thoughts to A+ therapist as I’m pretty sure she’s getting tired of talking about acceptance. I am slow learner in that department.

I am not the only one on a journey of healing or the only one that can relate to healing being a full time job that physically, mentally, and emotionally hurts. The journey to healing is one filled with many obstacles, lots of twists and turns, and raw pain that almost makes one want to abandon the journey all together. if you’re on that journey in anyway right now I see you and I applaud you for the strength and courage it takes to embark down the road towards healing.

Just remember.. healing fucking hurts sometimes.. and that’s ok.