In one of my previous posts about my journey with chronic illness, a reader left a lovely comment that really struck a chord with me: 'It honestly feels like a full-time job sometimes.' This comment resonated deeply, capturing the essence of living with chronic illness. It was a perspective I hadn't considered before, but it's true—managing a chronic condition is indeed like having a Part/Full-Time Job.

The challenges of living with a chronic illness are immense, requiring a significant portion of my time and energy to manage. Although it's not akin to a traditional full-time job, the constant responsibility of managing a chronic disease significantly impacts various aspects of my life. It consumes most of my everyday life – day and night.

Why does it feel like a full-time job

Why does it feel like a full-time job?:

• Medical appointments: Managing a chronic illness involves regular visits to see healthcare professionals, including doctors, specialists, and therapists. These appointments can take up a considerable amount of time, and emotional and physical effort, and require organising and planning. 

• Treatment and self-care: My chronic illnesses require ongoing treatment, such as medication management, GP appointments, OT, Physio etc. It also forces me to dedicate time to self-care, managing the pain and implementing pain management strategies, nutrition and diet, stress management techniques, mindfulness (for my mental health) and so much more.

• Research and education: With a chronic illness, especially one that is recognised as the most neglected disease in history, it’s important to keep informed about my condition; treatment options, and any advancements in medical research. This involves reading medical articles and literature and seeking information from reliable sources, mostly specific charities.

• Lifestyle adjustments: Living with a chronic illness forces me to make significant lifestyle changes. This includes modifying my diet, time management and pacing, managing stress levels, and ensuring adequate rest.

• Managing symptoms: My chronic illness comes with a range of symptoms that need to be managed daily. This involves monitoring symptoms, tracking patterns, and implementing strategies to alleviate discomfort or prevent relapses/symptom flare-ups.

• Emotional well-being: Coping with a chronic illness takes an emotional toll. Therefore I try to prioritise my mental well-being, practising relaxation techniques, and seeking support from family and friends, and online communities.

Living with a chronic illness leaves little room for other activities and leads to a sense of being constantly preoccupied with managing the illness. Furthermore, the unpredictability of flare-ups or complications can further add to the time and effort needed to cope with a chronic illness.

Connecting

I've also learnt to acknowledge that living with a chronic illness can be isolating at times. However, connecting with others who are going through similar experiences can provide a sense of community and understanding. Online support groups and forums have been a valuable resource for me, allowing me to share my journey, gain insights from others, and offer support to those in need. Building a network of understanding individuals has been instrumental in my ability to cope with the challenges of my chronic illness.

Final thoughts

While having a chronic illness can be demanding, I must remember I am not alone. I lean on my healthcare professionals, loved ones, and support groups for support, as all provide valuable assistance and understanding.  Additionally, exploring self-management strategies and developing a routine that accommodates my needs have helped me navigate the challenges more effectively.

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.