The Daily Struggles of Pain and Loneliness

I often find myself awake at 4 a.m., engulfed in discomfort. The pain is so intense that merely turning over in bed is a challenge. I frequently wake up abruptly, rushing to the bathroom to relieve my stomach. As I peer through the early morning mist outside my window, I feel an overwhelming sense of boredom and isolation. My neuropathy makes it impossible to type, but my thoughts flow in my mind. I try to distract myself with an audiobook, gripping my phone in hopes of receiving a call from someone, anyone. By 10:08 a.m., I've already been awake for hours, edging toward yet another nap. My friends are busy with their jobs, leaving me feeling abandoned—especially since my mother passed away. On days when my partner works long hours, the silence grows heavier; I am left with my pain and his exhaustion, leading to more solitude.

The Journey from Illness to Invalidity

I was medically retired at just thirty-five and have been on disability for nearly a decade. It's a term I hesitate to use, as I am not merely "disabled." If you’ve been in this position, you know the judgmental stares when you utter those words. I strive to be kind, thoughtful, generous, and creative, yet I face limitations that others label as disabilities. These challenges do not define me; they are simply part of my existence.

As a child, conditions like MCAS and hypophosphatasia were unknown. My complaints were often dismissed, and my identity was consistently invalidated. For over thirty-five years, my struggles went unacknowledged. I felt that the only way to gain attention was through excellence, which I pursued in school until depression took hold.

My dreams of attending college faded due to ADHD, depression, and illness as I lost interest in high school. My aspirations for institutions like NAU and Juilliard crumbled. I never disclosed my deep-seated feelings of depression and suicidal thoughts arising from my pain and bullying. I feared that I would only be met with disbelief, reinforcing my belief that something was inherently wrong with me. I longed for a chance to relive my childhood free from pain, to not be a burden to my family, and to not feel responsible for my parents’ separation.

The Harsh Reality of Isolation

Upon retiring, I came to the harsh realization that unless I appeared visibly incapacitated, my struggles would continue to be dismissed. My weight plummeted to 92 pounds as I became increasingly withdrawn. With multiple diagnoses, I spent countless hours at the Mayo Clinic undergoing tests. I was confined to bed for eighteen months, and my loneliness contributed to my deterioration. It was cannabis that ultimately helped me reclaim my life.

During physical therapy, I dressed up, hoping for a connection. A simple greeting or high-five meant everything to a woman longing for interaction. I wanted to feel seen again, not invisible.

A Life-Changing Reunion

One evening, two of my oldest friends, who I've known for over twenty years, surprised me with an unannounced visit. I had avoided their calls for nearly a year, thinking it would be kinder to spare them from witnessing my decline. They brought photo albums, and as I looked back over our shared memories, I wept. That night, I realized that I wanted to live again.

Literature as a Lifeline

Books have been my salvation. One particular author, Diana Gabaldon, had a profound impact on my life. Her series, "Outlander," captivated me beyond my initial prejudices. It transcends genres, weaving together time travel, history, and suspense. Through her characters, I found solace and imagined myself as their strong and resilient selves. The stories transported me to foggy Scotland, allowing me to escape my reality.

In 2018, I resolved to take control of my life and pursue writing. This decision became the catalyst for my transformation. I initiated a chronic pain and illness support group at a local cannabis dispensary, which I eventually transitioned online.

Finding Connection in Community

You can feel isolated even when surrounded by loved ones who don't truly understand your struggles. I encourage you to seek connections and find something to hold onto. Remember, if you’re hurting now, your story isn’t finished. Just like in a book, there are climaxes and resolutions waiting ahead.

There Is Hope Ahead

While I may not achieve literary fame or win the lottery, that is not my definition of a happy ending. I am learning to manage my pain and cope with flare-ups more calmly. Professional therapy has been invaluable, and the chronic pain support group I founded serves as my safety net. The friendships I’ve forged and the support I receive are invaluable.

I have also discovered a community on Medium, collaborating with fellow writers to hone my craft while enjoying light-hearted banter. Although I will sometimes feel isolated, I've learned to coexist with that feeling instead of merely surviving.

I am committed to thriving despite the persistent pain that accompanies me. Positivity is my guiding principle. If you're interested, I invite you to join our supportive community. Our gatherings and events are always free and open to anyone.

Severe Pain & Chronic Illness Support Group

How do you cope with feelings of isolation and loneliness? Please share your thoughts in the comments or contact me at:

[email protected]

The first video, "The Isolation of Highly Infectious Disease: Behind the Scenes at the BCU," offers insights into the emotional toll that illnesses can inflict on individuals.

The second video, "Impacts of Social Isolation on Mental Health," explores the profound effects of loneliness on psychological well-being, emphasizing the importance of connection.