The Impact of a Disabling Health Condition: A Personal Journey

The Impact of a Disabling Health Condition: A Personal Journey

Introduction: Turning Point in Life Due to Chronic Illness 

A diagnosis of a debilitating health condition, such as Chronic Fatigue Syndrome or Myalgic Encephalomyelitis, feels like a double-edged sword; it provides the much-needed answers, yet heralds an era filled with disability challenges. It's an overwhelming experience, one that left me feeling defeated, not by some unseen enemy but by my own body.

It was both welcoming and horrendous at the same time. (this is how it was for me). Fight or flight mode doesn’t come into it, I just felt defeated.

A Brief History

For the past few years, I’ve been very poorly, living with chronic pain, struggling day to day, and I was deteriorating - my world was getting smaller and smaller, my life becoming all consumed by poor health. My once vibrant world was slowly shrinking as I helplessly watched my health deteriorate, day after day. Despite holding onto hope and seeking countless medical consultations, and receiving physical therapy - the realisation soon dawned: there wasn't going to be a quick fix for my disability challenges, chronic fatigue, chronic pain and mobility disorder, it was devastating. I wasn’t getting any better, and I was desperate for answers, and clutched on to the hope that it could be ‘fixed’ –

But it couldn’t be fixed.

It was two years into my chronic illness and chronic pain journey before I finally started to receive answers. I attended appointments, medical treatment, and tests, and was being passed from one specialist consultant to another. I was struggling, I was desperate to find out why my body was failing me, why I was living in debilitating acute chronic pain.

I was desperate for a diagnosis, but also extremely anxious for one. two years in I finally received a significant diagnosis, only to then find out that wasn’t what was causing my disabling deterioration. Then another diagnosis came, and then another health issue, and another - and that has been the journey so far; a jumbled journey that has caused a myriad of emotions, heartache and disappointments – and one that has left me with grief.

How does one treat chronic pain?!

Over two agonising years filled with numerous doctor visits, physical therapy and many tests later, significant diagnoses began trickling in. But finding out what's wrong with you is just one side of the coin - accepting these diagnoses, accepting chronic pain and understanding their implications is another battle altogether.

The Tidal Wave of Emotions - Chronic pain 

It’s been an emotional Roller Coaster: Initially, there was relief (finding out what is wrong with you), but then there was shock, disbelief, a sense of panic, helplessness and a sense of loss. Anxiety, fear, and anger became constant companions as I grappled with the uncertainty of the future and the changes I was forced to adapt to.

Adapting to Physical Limitations 

One of the most noticeable effects of a disabling health condition (apart from chronic pain) is the physical limitations it imposes. Simple tasks that were once effortless are now challenging or impossible to perform. My physical health, mobility, strength, and endurance are all compromised, leading to a loss of full independence. Coping with physical limitations and constant pain involves adapting to new routines, utilising assistive devices, and finding ways to maintain a sense of autonomy. As well as managing pain.

It also involves learning to accept, grieve and come to terms with how it will be now!

Chronic acute pain, debilitating fatigue, mental health and other symptoms can lead to frustration, irritability, and grief. Grief for the life I had before and coming to terms with the life I have now. The constant battle with physical limitations, physical pain and the uncertainty of the condition's progression also contribute to feelings of hopelessness and anxiety.

Adjusting Lifestyle & Finding New Meanings

It means significant lifestyle adjustments, and protecting my mental health. Hobbies, activities, and social events must be modified or given up entirely. Planning outings or trips become more complex; adapting to a new normal has been challenging and it continues to be. My focus now is to find new sources of fulfilment and lead a meaningful life; as well as to learn how to manage chronic pain and to avoid making the pain worse. This involves pain medicine, mental wellbeing, gentle yoga, deep breathing, relaxation techniques, pacing etc.

Finding Inner Peace amidst the Chaos

After the grief from the diagnosis, I have concentrated and worked on self-help to strive to adapt, accept and find the new me - chronic pain is now part of me. It’s slowly working, I am not crying myself to sleep so much, I am smiling more, and I am slowly finding inner peace - this has been possible by having the best husband, great kids, family and friends. 

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.