Humans of ME/CFS
Illness has unraveled me. Like others with invisible illness, at different points, I have lost nearly everything. Yet, I am one of the lucky ones. Most of my 20s I had little energy for family, friends, hobbies, relationships, education or career flexibility. And yet, while I am still grieving watching life pass me by, I continue to be reinvigorated and healed only by what I can describe as pure grace.
Coping with the stigma of an invisible, misunderstood illness has gifted me with a nourishing connection to self, soul and planet and a ferocious compassion for all life.
My earliest memory of being different is not having the energy to run and holler on the playground like other kids. Socially, delayed cognitive processing and ADD-like brain fog made adolescence excruciating. I grew up playing outside in a haze of pesticides sprayed on the cornfields around my house.
A Type A personality, I pushed through. I went into deep denial in high school when my blood pressure and adrenal fatigue was so bad I would black out standing up too quickly or close my eyes to rest when walking down the halls. I almost didn’t make the last few months of high school even though I amassed achievements a mile long.
It was in college that I completely lost control. Life felt like a death match gameshow I could not win. Cycling through severe stomach pain, exercise-induced blackouts, muscle pain, amnesia, neuropathy, insomnia, nausea and depression was the norm. I should have dropped out. Chronically flu-like, I blamed myself. I chose to hide and overcompensate and graduated with honors.
I had a burst of almost-normal energy followed by another decline, and this cycle continued until I was housebound on and off for years and then six months straight in 2013. At one point, my depression became severe, and I was fighting for a reason to “be here.”
It is humiliating to be told that my symptoms couldn’t be real. Intolerant of making other people uncomfortable, or being dismissed, I further cut myself off.
The beauty of reaching these depths of despair was that I finally dropped within and let go of control, expectations and attachments. If I could stop judging my experience, I might find peace.
While I still experience relapse and down cycles, I am now healthier at a core level than I have ever been. After a lifetime of illness, I have made a 65 percent recovery by engaging in therapies to heal CNS dysfunction, naturopathy, somatic work, and most importantly, taking up a strict diet of rebellious self-love and self-advocacy.
I am now successfully self-employed helping others reckon with chronic illness.
I wouldn’t change the agonizing soul lessons that have brought me here for a thousand carefree years in the sun. Little by little, as I let go and listen to the whisperings of guidance within, I am regaining more than I could have ever lost.
I am unspeakably blessed.