'Suffering with a chronic illness is not just physically draining, but also emotionally unbearable'

February 11, 2019

 

'February is one of the coldest months of the year and therefore is marked as a time to raise awareness for Raynaud’s Phenomenon. However, for Raynaud’s sufferers, every single day is a Raynaud’s day because there is no cure. Whilst unknown to some, Raynaud’s Phenomenon is a condition thought to affect up to ten million people in the UK and it can be incredibly painful both physically and emotionally.

 

My own experience with Raynaud’s started as early as my childhood. I vividly remember my hands turning through a rainbow of shades when swimming or sitting in a drafty assembly hall. From as young as 9 years old I recognised that I was already very different from my fellow classmates and would painstakingly warm my hands between my knees or neck in agony. Thankfully my Grandmother also had Raynaud’s and immediately took me to see a doctor. An official diagnosis of Raynaud’s was given however I was told I would grow out of it and there was nothing to worry about.

 

During my late teens and early twenties a ‘clusters of symptoms’ started to develop within my body. This led to a battle of 10 years with things that I thought were all completely unrelated (I was diagnosed with a benign Pituitary Tumour, PCOs and Endometriosis during my studies but my other

symptoms over the years never related to these). Instead, I was gathering answers for a great many unexplained or misdiagnosed conditions that were actually side effects of the auto-immune disease Scleroderma.

 

Like every undiagnosed, chronically ill person reading this knows only too well, suffering in such a way is not just physically draining, but also emotionally unbearable. You have to fight relentlessly to be taken seriously by the medical profession and it truly feels being in an actual ‘game’ attempting to fit the pieces of the jigsaw together yourself. I started to feel like I didn’t know who I was anymore, as my body was transforming beyond my control and I didn’t know how to help or stop it getting worse.

 

Incidentally, it was this act of joining the jigsaw pieces together that resulted in me finally receiving help when I was receiving injections for carpal tunnel syndrome (something that is quite common as the initial manifestation for a Scleroderma diagnosis) and my specialist asked if I had looked into my Raynaud’s Phenomenon more deeply, and because I hadn’t, he referred me to a rheumatologist.

 

I met my rheumatologist for the first time in January 2018. He explained that Raynaud’s is either a primary disease or linked to other illnesses including Scleroderma or Lupus. After a thorough physical exam, I was then sent for blood tests to check for elevated blood levels of certain antibodies produced

by the immune system. Because Scleroderma can take so many forms and affect so many different areas of the body, it can be difficult to diagnose on the spot, and because there’s a small chance that 1 in 10 of those with primary Raynaud’s can go on to develop secondary Raynaud’s. Eventually I received my diagnosis for Scleroderma from the blood test result. The name of the condition comes from the Greek, ‘sclero’ for hard, and ‘derma’ for skin and it is a very rare, chronic disease of the immune system, blood vessels and connective tissue that affects up to 2.5 million people worldwide including about 19,000 in the UK.

 

There are a few variations of Scleroderma and I have limited systemic sclerosis meaning that the excess of collagen causes scarring and stops the affected parts of the body such as the heart, oesophagus, blood vessels, kidneys, lungs, blood pressure and digestive system from functioning normally.

 

Naturally the diagnosis was heartbreaking, and it’s taken me longer still to grasp the situation fully. Because ironically, despite living with this and a series of other chronic illnesses, I still cannot grasp the deeply debilitating and mystifying elements of this illness, and especially how it could of been related to my Raynaud’s.

 

However as time goes on, I know it’s totally okay to grieve this on a daily basis. But I realise now that even on the worst days all I want to do is help others so they don’t have to suffer the long anguish of isolation and pain I suffered on my long battle to be diagnosed.'

 

 

You can read more about Georgie's experience of living and managing Raynaud’s and Scleroderma here: https://www.georgiexoxo.com/2019/01/raynauds-awareness-month/

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