Sean’s Voice: Living with ME/CFS and the Quest for Understanding

In the heart of our Open Medicine Foundation family, there are personal stories that bring to light the stark reality of living with ME/CFS and Long COVID. Today, we invite you to witness the profound narrative of Sean Henneberry, a brave soul who has been navigating the turbulent waters of ME/CFS and Postural Orthostatic Tachycardia Syndrome (POTS) since his early teens.

In Sean’s Own Words

Hello, my name is Sean Henneberry. I’m 19 years old, and I’ve been living with ME/CFS since I was 13, following an EBV infection that also affected my siblings.

My journey began with mild to moderate symptoms that barred me from regular schooling and limited my ability to leave the house. At 16, my condition progressed to severe ME/CFS and POTS, leading to six months of severe medical neglect before finally being acknowledged and treated, thanks to the intervention of an ME advocate. It is no exaggeration when I say that I would not be here today had my ME advocate not intervened when they did.

The back-and-forth of being in and out of the wrong hospital for those six months, coupled with regular POTS attacks and non-epileptic seizures, took a massive toll on my body. Since May of 2021, I have been bed-bound, unable to sit up. I am now in the process of moving within Ireland to seek better treatment.

Before getting sick, I was an overachiever in my academics. At age 12, I won an award for best short story in a creative writing competition held by my primary school (featured in the picture). I had dreams of driving and a fascination with cars. The shattering reality of these illnesses never fails to remind me that I am very far off from being able to pursue the dream of something as simple as being able to drive my car. I can recognize now, however, the significance of the mundane and being able to carry out everyday tasks.

While I’ve lost contact with my old friends, I’ve made a new one online who shows me patience and understanding, which has been the foundation of our lasting friendship.

Being bed-bound means relying on my parents for nearly everything, which continuously challenges my sense of dignity and autonomy. I have to use a urinal and bedpan to go to the toilet, which continuously attacks my sense of dignity. Not being able to do anything independently and have a sense of autonomy has been a severe detriment to my overall mental well-being, with regular episodes of intense depression, extreme anxiety, and stress.

Despite this, my love for stop-motion animation, a hobby I’ve had since I was 11, provides me with an escape and a sense of achievement. I animate from my bed, hoping to hone my skills for future freelance opportunities.

Music is another passion of mine, offering therapeutic respite. My creativity endures, though now with more grounded expectations.

I wish for a day when ME/CFS is understood as clearly as more widely recognized conditions, eliminating the need to explain its severity to those around me, including medical professionals.

Thank you for reading my story,

Sean

Our Commitment to Change

Sean’s story is not just a narrative; it’s a call to action—a plea for understanding, research, and treatment. It’s a reflection of the challenges that so many in our community face and an embodiment of the hope that sustains them. Open Medicine Foundation is more committed than ever to changing the narrative for individuals like Sean.

To empower patients and their families, we’ve compiled a collection of resources for patients, parents, and healthcare professionals. These materials provide valuable information and support to navigate the complexities of ME/CFS & Long COVID. You can access them here.