The Reality of Living with a Chronic Illness: How Waiting Becomes a Way of Life
So Much Waiting
Since becoming chronically ill, with MECFS (Chronic Fatigue Syndrome / Myalgic Encephalomyelitis), I'd never realised how much of our lives vanish while waiting to see doctors, waiting for test results, waiting for referrals, waiting for new treatments to work, etc. Months and years just disappear while we are stuck on wait lists, a common plight for those living with chronic illnesses.
Living with a chronic illness is a daily battle, filled with physical pain and emotional exhaustion. But what often goes unnoticed is the incredible amount of time that is swallowed up by waiting, waiting, waiting and more waiting. It's a never-ending cycle that leaves little room for anything else in my life, highlighting the pain and fatigue that come with chronic conditions. Since becoming chronically ill, I've come to realise just how much of my precious time is wasted in these moments of anxiety and anticipation - caused by ‘waiting’.
I have discovered that waiting brings about a feeling of isolation, leaving one to feel alone and disconnected from the rest of the world. Throughout the periods of waiting for medical appointments and test results, I have found myself missing out on social engagements, family get-togethers, and significant occasions. Even if I manage to attend such events, the looming ‘waiting’ is always at the back of my mind, preventing me from fully engaging and enjoying the moment. This sense of detachment, a side effect of chronic illness, can be quite overwhelming and exhausting.
Life In Limbo
Living with a chronic illness has a way of reshaping the perception of time. Suddenly, moments that were once filled with productivity and fulfilment seem to slip away as I find myself constantly waiting – these endless waiting periods become the new norm, accompanied by fatigue and chronic pain, reshaping not just my life but also my husband's, and mum's. It is during these moments of anticipation and uncertainty that I’ve realised just how much of my life is spent in limbo.
I’ve also found that all this waiting and being left in limbo, has an impact on my sense of identity and self-worth. Before becoming chronically ill, I defined myself through my career, my hobbies, and my personal achievements. However, the constant waiting and focus on medical matters and living with chronic pain overshadows these aspects of identity. The waiting game becomes a central part of life, overshadowing life.
Managing Chronic Pain
Waiting on medical wait lists can be a frustrating and disempowering experience. But I have found some strength in this journey, I’ve found it has motivated me to become more proactive in managing my chronic pain and I started practising Yoga, breathing exercises, etc. Through these self-care practices, I have reclaimed a sense of control and agency in the face of uncertainty. It may not eliminate the waiting, but it has provided me with a sense of empowerment and resilience.
Waiting has also given me a newfound appreciation for the small moments of joy and respite that come in between. Whether it is a quiet cup of tea in the morning or a heartfelt conversation with a loved one, these moments become precious treasures amidst the waiting. They serve as reminders that life can still be lived and cherished, even in the midst of uncertainty.
Final Thought
While the waiting may never fully disappear from my life, I am learning to navigate it with grace and find moments of solace and meaning along the way.
About me
I am a married mother of four children, in my mid 40's. I run a small business and enjoy writing, which is why I blog. My blog focuses on my experiences of living with chronic illnesses and disabilities such as ME/CFS, spinal stenosis, chronic pain, and fibromyalgia.