We are in the middle of Invisible Illness Awareness Week, so i’ve been thinking of a way to talk about what it actually is and how it affects me.
So to define invisible illness;
Invisible illnesses are chronic illnesses and conditions that significantly impair normal activities of daily living.
The definition, tells us what it does but their are so many different spectrums of invisible illness, that everyone’s experience is different. My journey with invisible illness involves a complex list of illnesses, which include; fibromyalgia, mixed connective tissue disease including lupus SLE and Wegeners Granulomatosis, Ulcerative Colitis, anxiety, depression and functional neurological disorder. Each one of my illnesses joined together mix a chronic cocktail to significantly impair my life walk.
So, I’ve defined invisible illness and what it is to me, now what does a average day look like. This, is difficult to describe because everyday can be so very different to everyone that lives with these most chronic and varied conditions. So let me tell you a little bit about of how invisible illness can affect me, on any given day. My invisible illnesses leave me feeling so exhausted, that I feel like I am clinging to the edge of life but because nobody can see what and how I’m feeling, many times people judge me and tell me that what I’m feeling is not real, other times that I’m just a failure and many times,” oh Lisa Raie you are looking so well” but seriously I may be having one really bad day. Having people say these type of things, makes living with such chronic and complex invisible illnesses oh so, very lonely as I get so tired of having to prove my illnesses. I have infact lost many people along my journey. For the ones that I still call family, friends and colleagues they know that plans may need to be changed or postponed when pain and illness cause immense problems.
Every day I do the best I can, if I need to sleep, I now sleep, if I need to change booked commitments, I will change or cancel and if I’m told that I’ve let someone down – I just have to deal with it. It is hard to take when people get angry or upset, but I know that as much as I try and make them understand they can’t – why because unless you live with these chronically hidden illnesses, you can never feel what I am feeling. Many times, I’ve felt like saying – ” I wish you could feel what I feel ” but seriously I would never want anyone to feel what I live with.
Living with such invisible illnesses has taught me to be strong at times when I thought that my time maybe up. I’ve learnt what never giving up really means and it’s why I’m now wandering the globe talking and sharing my experiences so that those uneducated and ignorant to invisible illness become aware. When we can all walk together, it is my hope that further help, assistance and change can be given to all the invisible illness warriors and goddesses.
If you’ve resonated with my words, please connect with me over on my social media channels because we all walk as one and it would be great to walk as one together rather than tearing each other apart.
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