How I'm Using My Artwork to Bring Visibility to Life With Myalgic Encephalomyelitis

This May 12th is the global #MillionsMissing protest for myalgic encephalomyelitis (ME) health equality. We’re asking for increased government funding for research, clinical trials, medical education, and public awareness. I decided to showcase some of my artwork inspired by my experiences of living with ME, to help bring more visibility to the lives affected by this disease.

“Exiled Into the Shadowlands”

“Exiled into the Shadowlands” symbolizes how ME makes one physically, emotionally, and socially isolated. This is the fallout from historical neglect, disbelief, and judgments surrounding this disease. Shame and isolation have been shrouds over this community for decades. For many, their own beds become a prison sentence of unknown duration, served behind closed doors, unseen, unheard, and still disbelieved. You can’t help but feel like a whisper of your former self, inaudible to the world.

“Paralysis in Time and Body”

“Paralysis in Time and Body” epitomizes my most severe days, when my body feels completely weighted down, drained of its once familiar strength. I enter a limbo state of not living, but not dead—just suspended in a world of half living, trapped within my own body. A body I am intrinsically bound too whether in sickness or in health.

“Forfeit of Identity”

“Forfeit of Identity” represents the world I had built and come to know being turned upside down. This disparate reality was full of parameters and constraints, so much so, that I had become barely recognizable even to myself. When faced with such circumstances, one has but one choice — to surrender, and in doing so, forfeit your former self and identity.

“Sea of Grief “

“Sea of Grief” speaks to the river of grief that is ever flowing and shared amongst this community.

Our sea of grief holds all the lives lost and struggles endured because of this disease.

All of us have had to let go of facets of our lives once held so dear, no matter how hard we fought to preserve them. My most piercing grief is knowing what my life could have been like without ME, and the lack of control I have over that.

“Energy Lanes”

“Energy Lanes” symbolizes the invisible line that exists for all living with ME. Pacing ourselves within our individual energy limits prevents something called post exertion malaise (PEM). To push past our energetic capacity has consequences that don’t present immediately. A crash lies in wait, seeping in 24 hours later — or even days later —into our bodies. It is an exacerbation of all symptoms, and can last for days, weeks, or even years depending on disease severity. This is by far the most frustrating part of ME for me. It forces me to hold myself back with the tightest of reigns at all times. This personal restraint is an effort to preserve the fragments of health that may come my way.

“Resting as Resistance”

“Resting as Resistance” represents the days I feel as if I’m lying in wait. Waiting for my health to slowly improve, waiting for answers as to why and how my body could get so sick in the first place. Understanding the whys and hows of this disease is dependent on research, which is dependent on funding. My most steady goal is to meet these answers while I’m still alive. It’s also to help clear the pathway for those who follow behind in our footsteps. In the meantime, I will use my body and experiences as a catalyst for change. If I view resting as a form resistance, I am able to make peace with my body and this illness a little more.

I hope my artwork brings more insight into the experience of living with ME. For more information or how to become involved in the Millions Missing movement, please visit www.millionsmissing.org for more information. You can watch the corresponding #MillionsMissing video clip here.