Thursday, 17 August 2017

The Importance of Having A Strong Support Network Around You In Chronic Illness

If you were to ask anyone living with a chronic illness what the most important thing you need in your life, chances are most would agree it is all about having a strong support network beside you. 

Chronic illness can sometimes leave you feeling isolated and alone as no one understands what you are experiencing. We may spend many days feeling invalidated because people brush our conditions aside. Whilst it is a difficult concept to understand for most, what we look like on the outside oftentimes doesn't match the way we feel on the inside. 

Some, may not believe that simple, everyday realities can be feel like climbing Mount Everest.. all because on the outside "we look fine". 

For me personally, I wake almost every day more tired than when I went to sleep - fatigue isn't just "tired", it can leave you with a foggy brain, limited amount of energy, and feeling like you have had the longest, hardest week at work with no sleep... and when you approach the weekend, you cannot simply "just sleep it off". It doesn't leave your body, it affects your life in so many ways, every day our bodies are attacking themselves. Pain fills my body, it may be my joints clicking out of place, due to EDS, it could be my gastroparesis symptoms, meaning I will simply struggle to eat any food without it repelling back up... Or it may be my colonic inertia, gifting me with severe constipation, the build up of food so bad that I have to keel over in pain, clutching my stomach unable to move waiting for the day I spend unable to do anything except emptying my bowels and feel some relief... Amongst all of this, chances are I may experience some PoTS symptoms, which include palpitations, dizziness often causing me to collapse... 

Many people struggle to comprehend these symptoms as they see you for a few hours here and there, yet there are some who support you, day and night seven days a week, fifty-six weeks a year... Those who can see behind your exterior and are there no matter how you look or feel. 

My partner has helped to encourage me on my toughest days when I struggle with my symptoms, and all the things that come along with them.. He understands, although not in the sense of having an experiential grasp of my conditions, but he understands that my apparent external disposition is just a mask covering the inner struggle I experience every day. He is genuinely concerned about my well-being, he understands that despite the fact there are many days I spend trying to carry out impossible tasks (usually with a gentle reminder - of a flare/symptoms) it is me trying not to let my condition hold me back.. 

He is always wondering how he can help make me feel better, take the pain away, provide me some relief of symptoms, or calming my fears foisted upon by the anxiety... Every time, he realises that he is not superhuman, and that all he can do is be there and whilst for you it is not enough, for me it is. 

It is enough to have him by my side through every symptom and struggle, to have his hand to hold, or offering me a cuddle when I need it. It is enough to have him there with me, providing support without judgement, condemnation or disbelief. 

It is enough to know that nothing can persuade him to turn his back like so many others have done. 

Most of all, it is enough to know that despite everything- the conditions and their manifestations, the lack of support from other people who should and the general feeling of a tide always being against us - he is prepared to stay here and stick it out with me, fighting these conditions together as a team.. 

"The Hopeful Chronic"


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