This invisible illness community has been hidden, shamed, and marginalized for decades. The medical community has ignored the millions suffering with ME and Long COVID. Some of the Pillow Writers have been chronically ill for more than 40 years. Now, through their writing, the Pillow Writers open their voices to you. Readers are offered a look inside the rich lives and the talent of the Pillow Writers community. Many of the poems and stories directly or indirectly investigate the strength, invisibility, the doubts of others, and other internal experiences of those living with chronic illness. However, the pieces in this initial issue also explore subjects unrelated to chronic illness—the humor and airs of British gossip during high tea, the details of friendship with a blackbird, and the experience of being captured by a spaceship. 

Among those sharing ‘near life experiences’, the Pillow Writers are writers from Scotland, England, Ireland, Colombia, and the United States. The writers include a former evolutionary biologist, university professor, medical engineer, academic adviser, life coach, and book editor. Years ago and decades ago, each of these writers was forced to leave their careers due to the devastating long-term effects of ME and Long COVID. Their voices are heard in the Pillow Writers Anthology.

What do the Pillow Writers hope readers will find in the anthology?
Pillow Writer Carissa wants readers to understand the anthology is an acknowledgement of the gifts and values those living with illness have and hold and expects readers will “feel drawn into our experiences and be open to witnessing this rare and often unseen (or disregarded) way of life.”

Pillow Writer Lisa added that the anthology offers readers “The varied and very real experience of living with ME and Long COVID….that we are more than our illnesses; we are creative, funny, compassionate and whole human beings.”

Betsy’s short story in the anthology was based on wild bald eagles that she saw on a quilting cruise to Alaska (during a remission when she was able to work and travel). This writing was her first attempt at writing about protecting wildlife and conservation, which has been a passion throughout her life. “Seeing my words published brings me joy and a deep sense of accomplishment in the midst of my daily struggle.”

The anthology has created a stronger sense of community among the Pillow Writers. The anthology offers additional solidarity, healing, and relief from isolation.

One Pillow Writer shares, “When I feel alone, I pick up my copy and I’m among friends who understand. What a gift.” 

For the Pillow Writers to reach beyond their writing group and make their writing available to friends, family, and the public means belonging to the larger world. Pillow Writer Una says, “I often don’t feel part of the real world because I am housebound. To have a piece of me in a published book out there in the world makes me feel like I really exist in the world, I have a presence beyond my four walls.”

Another contributor to the anthology expressed what it means to be part of the Pillow Writers community and to see her work in the anthology. “There are so few places and opportunities to feel belonging; The Pillow Writers and this anthology have created that space and it has really become something rare and sacred. To live with ME is to be placed at the margins of our social structure; it often feels like I am invisible, and this can make me question my existence on the whole. Holding the hard copy of our anthology for the first time was deeply moving  because it was a physical, tangible sample of our collective existence and the wonderful value we all hold and all that went into the creations on the pages of our collective manuscript. I was so proud of my fellow writers, their works, and the fact that we have generated a lasting reminder that we are still here and finding ways to live, be and connect in a world that doesn’t actively provide us with these opportunities.”

Some of the Pillow Writers pointed out that having ME gave them the time to write. One member stated, “Without the support of Pillow Writers I wouldn’t have had the courage. The anthology is a great reminder to focus on the things we can still do and the joy still to be found in life and in the company of other people.”

Who do the Pillow Writers hope will read the Pillow Writers Anthology?
One of the Pillow Writers summed up the response of many of the Pillow Writers, “so much humanity is present in these pages that anyone may find a passage they relate to or develop a connection and understanding. I hope others in the chronic illness community find their way to these pages and can draw comfort in the knowledge that they are not alone and that connections and opportunities for their creations and themselves to be valued and included still exist. I hope members of the medical community will look at these stories to learn more about the personalities of those they are treating and caring for (and that a willingness to learn more to help with the complexities of ME). I hope the loved ones of those living with ME and chronic illness will appreciate what is represented in these pages.